CLASS THREE Handout #1A

National Alliance on Mental Illness page printed from http://www.nami.org/ 1-800-950-NAMI; [email protected] ©2008

Facts on Children’s Mental Health in America

The reports by the U.S. Surgeon General1 and President Bush’s New Freedom Commission on Mental Health offer great hope to the millions of children and adolescents living with mental disorders and their families.2 Through appropriate identification, evaluation, and treatment, children and adolescents with mental disorders can lead productive lives. They can achieve success in school, in work, and in family life. Nonetheless, the overwhelming majority of children with mental disorders fail to be identified, lack access to treatment or supports, and needlessly suffer throughout their lives. Stigma persists, and millions of young people in this country are left behind.

Prevalence of Child and Adolescent Mental Disorders

 Four million children and adolescents in this country suffer from a serious mental disorder that causes significant functional impairments at home, at school, and with peers. Twenty-one percent of our nation’s children ages 9 to 17 have a diagnosable mental or addictive disorder that causes at least minimal impairment.1

 Half of all lifetime cases of mental disorders begin by age 14. Despite effective treatments, there are long delays, sometimes decades, between the first onset of symptoms and when people seek and receive treatment. An untreated mental disorder can lead to a more severe, more difficult to treat illness, and to the development of co- occurring mental illnesses.3

 In any given year, only 20% of children with mental disorders are identified and receive mental health services.4

Consequences of Untreated Mental Disorders in Children and Adolescents

Suicide

 Suicide is the third leading cause of death in youth aged 15 to 24. More teenagers and young adults die from suicide than from cancer, heart disease, AIDS, birth defects, stroke, pneumonia, influenza, and chronic lung disease combined.5 Over 90% of children and adolescents who commit suicide have a mental disorder.6

 In 2002, almost 4,300 young people ages 10 to 24 died in this country by suicide.7  States spend nearly $1 billion annually on medical costs associated with completed suicides and suicide attempts by youth up to 20 years of age.8 School Failure

 Approximately 50% of students with a mental disorder age 14 and older drop out of high school; this is the highest dropout rate of any disability group.9

Juvenile and Criminal Justice Involvement

 Youth with unidentified and untreated mental disorders also tragically end up in jails and prisons. According to an NIMH funded study – the largest ever undertaken – an alarming 65% of boys and 75% of girls in juvenile detention have at least one mental disorder.10 We are incarcerating youth with mental disorders, some as young as 8 years old, rather than identifying their disorders early and intervening with appropriate treatment.

Higher Health Care Utilization

 When children with untreated mental disorders become adults, they use more health care services and incur higher health care costs than other adults. Left untreated, childhood disorders are likely to persist and lead to a downward spiral of school failure, limited or non-existent employment opportunities, and poverty in adulthood. No other illnesses harm so many children so seriously. Early Identification, Evaluation, and Treatment are Essential to Recovery and Resiliency

 Research shows that early identification and intervention can minimize the long-term disability of mental disorders.2

 Mental disorders in children and adolescents are real and can be effectively treated, especially when identified and treated early.

 Research has yielded important advances in the development of effective treatment for children and adolescents living with mental disorders. Early identification and treatment prevents the loss of critical developmental years that cannot be recovered and helps youth avoid years of unnecessary suffering.11

 Early and effective mental health treatment can prevent a significant proportion of delinquent and violent youth from future violence and crime.12 It also enables children and adolescents to succeed in school, to develop socially, and to fully experience the developmental opportunities of childhood.

May 2006 1 U.S. Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health, 1999. 2 New Freedom Commission on Mental Health, Achieving the Promise: Transforming Mental Health Care in America. Final Report. DHHS Pub. No. SMA-0303832. Rockville, MD: 2003.

3 National Institute of Mental Health Release of landmark and collaborative study conducted by Harvard University, the University of Michigan and the NIMH Intramural Research Program (release dated June 6, 2005 and accessed at www.nimh.nih.gov). 4 U.S. Public Health Service, Report of the Surgeon General’s Conference on Children’s Mental Health: A National Action Agenda. Washington, DC: Department of Health and Human Services, 2000.

5 National Strategy for Suicide Prevention: Goals and Objectives for Action. Rockville, MD: U.S. Dept. of Health and Human Services, Public Health Service, 2001.

6 Shaffer, D., & Craft, L. “Methods of Adolescent Suicide Prevention.” Journal of Clinical Psychiatry, 60 (Suppl. 2), 70-74, 1999.

7 Kochanek KD, Murphy SL, Anderson RN, Scott C. Deaths: Final data for 2002. National vital statistics reports; vol. 53 no 5. Hyattsville, Maryland: National Center for Health Statistics. 2004.

8 NGA Center for Best Practices, Youth Suicide Prevention: Strengthening State Policies and School-Based Strategies

9 U.S. Department of Education, Twenty-third annual report to Congress on the implementation of the Individuals with Disabilities Education Act, Washington, D.C., 2001.

10 Teplin, L. Archives of General Psychiatry, Vol. 59, December 2002.

11 The National Advisory Mental Health Council Workgroup on Child and Adolescent Mental Health Intervention Development and Deployment. “Blueprint for Change: Research on Child and Adolescent Mental Health.” Washington, D.C.: 2001.

12 U.S. Surgeon General, Youth Violence: A Report of the Surgeon General. DHHS. Rockville, MD: 2001.

CLASS THREE Handout #2

DIAGNOSIS: ______

1. List the symptoms and behaviors.

2. Prevalence rates/gender

3. Is this a hereditary disorder?

4. What treatment would be recommended?

5. List one interesting fact you learned from this research.

6. Anything else you would like to share.

CLASS THREE Handout #3

DISTRIBUTED BY NAMI New Hampshire New Hampshire’s Voice on Mental Illness (800) 242-6264 or (603) 225-5359 National Alliance on Mental Illness [email protected] or www.naminh.org page printed from http://www.nami.org/ 1-800-950-NAMI; [email protected] ©2008 Adapted based on DSM V December 2013

Anxiety Disorders in Children and Adolescents

What are anxiety disorders? Anxiety disorders cause people to feel excessively frightened, distressed, and uneasy during situations in which most others would not experience these symptoms. Left untreated, these disorders can dramatically reduce productivity and significantly diminish an individual’s quality of life. Anxiety disorders in children can lead to poor school attendance, low self-esteem, deficient interpersonal skills, alcohol abuse, and adjustment difficulty.

Anxiety disorders are the most common mental illnesses in America; they affect as many as one in 10 young people. Unfortunately, these disorders are often difficult to recognize, and many who suffer from them are either too ashamed to seek help or they fail to realize that these disorders can be treated effectively.

What are the most common anxiety disorders?  Panic Disorder -- Characterized by panic attacks, panic disorder results in sudden feelings of terror that strike repeatedly and without warning. Physical symptoms include chest pain, heart palpitations, shortness of breath, dizziness, abdominal discomfort, feelings of unreality, and fear of dying. Children and adolescents with this disorder may experience unrealistic worry, self- consciousness, and tension.  Specific Phobias -- A phobia is a disabling and irrational fear of something that really poses little or no actual danger. The fear leads to avoidance of objects or situations and can cause extreme feelings of terror, dread, and panic, which can substantially restrict one’s life. "Specific" phobias center around particular objects (e.g., certain animals) or situations (e.g., heights or enclosed spaces).  Generalized Anxiety Disorder -- Chronic, exaggerated worry about every day, routine life events and activities that lasts at least six months is indicative of generalized anxiety disorder. Children and adolescents with this disorder usually anticipate the worst and often complain of fatigue, tension, headaches, and nausea.  Separation Anxiety –developmentally inappropriate and excessive fear or anxiety concerning separation from those to whom the individual is attached and may include persistent and excessive worry about experiencing an untoward event e.g. getting lost, being kidnapped; fear or reluctance about being alone, reluctance or refusal to sleep away from home or without major attachment figure; repeated physical complaints when separation from major attachment figures occurs or is anticipated.  Social Anxiety Disorder (Social Phobia) Marked fear or anxiety about one or more social situations in which the individual is exposed to possible scrutiny by others; children express by crying, tantrums, freezing, clinging, shrinking, or failing to speak in social situations. Other recognized anxiety disorders include: separation anxiety, selective mutism, agoraphobia, anxiety disorder due to medical conditions (such as thyroid abnormalities), and substance-induced anxiety disorder (such as from too much caffeine).

Are there any known causes of anxiety disorders? Although studies suggest that children and adolescents are more likely to have an anxiety disorder if their caregivers have anxiety disorders, it has not been shown whether biology or environment plays the greater role in the development of these disorders. High levels of anxiety or excessive shyness in children aged six to eight may be indicators of a developing anxiety disorder.

Scientists at the National Institute of Mental Health and elsewhere have recently found that some cases of obsessive-compulsive disorder occur following infection or exposure to streptococcus bacteria. More research is being done to pinpoint who is at greatest risk, but this is another reason to treat strep throats seriously and promptly.

What treatments are available for anxiety disorders? Effective treatments for anxiety disorders include medication, specific forms of psychotherapy (known as behavioral therapy and cognitive-behavioral therapy), family therapy, or a combination of these. Cognitive-behavioral treatment involves the young person’s learning to deal with his or her fears by modifying the way he or she thinks and behaves by practicing new behaviors.

Ultimately, parents and caregivers should learn to be understanding and patient when dealing with children with anxiety disorders. Specific plans of care can often be developed, and the child or adolescent should be involved in the decision-making process whenever possible.

CLASS THREE Handout #4

National Alliance on Mental Illness DISTRIBUTED BY page printed from http://www.nami.org/ NAMI New Hampshire 1-800-950-NAMI; [email protected]

New Hampshire’s Voice on Mental Illness (800) 242-6264 or (603) 225-5359

Attention-Deficit/Hyperactivity Disorder

What is attention-deficit/hyperactivity disorder? Attention-deficit/hyperactivity disorder (ADHD) is an illness characterized by inattention, hyperactivity, and impulsivity. The most commonly diagnosed behavior disorder in young persons, ADHD affects an estimated three percent to five percent of school-age children.

Although ADHD is usually diagnosed in childhood, it is not a disorder limited to children -- ADHD often persists into adolescence and adulthood and is frequently not diagnosed until later years.

What are the symptoms of ADHD? There are actually three different types of ADHD, each with different symptoms: predominantly inattentive, predominantly hyperactive/impulsive, and combined.

Those with the predominantly inattentive type often:  fail to pay close attention to details or make careless mistakes in schoolwork, work, or other activities  have difficulty sustaining attention to tasks or leisure activities  do not seem to listen when spoken to directly  do not follow through on instructions and fail to finish schoolwork, chores, or duties in the workplace  have difficulty organizing tasks and activities  avoid, dislike, or are reluctant to engage in tasks that require sustained mental effort  lose things necessary for tasks or activities  are easily distracted by extraneous stimuli  are forgetful in daily activities  Those with the predominantly hyperactive/impulsive type often:  fidget with their hands or feet or squirm in their seat  leave their seat in situations in which remaining seated is expected  move excessively or feel restless during situations in which such behavior is inappropriate  have difficulty engaging in leisure activities quietly  are "on the go" or act as if "driven by a motor"  talk excessively  blurt out answers before questions have been completed  have difficulty awaiting their turn  interrupt or intrude on others Those with the combined type, the most common type of ADHD, have a combination of the inattentive and hyperactive/impulsive symptoms.

What is needed to make a diagnosis of ADHD? A diagnosis of ADHD is made when an individual displays at least six symptoms from either of the above lists, with some symptoms having started before age seven. Clear impairment in at least two settings, such as home and school or work, must also exist. Additionally, there must be clear evidence of clinically significant impairment in social, academic, or occupational functioning.

How common is ADHD? ADHD affects an estimated two million American children, an average of at least one child in every U.S. classroom. In general, boys with ADHD have been shown to outnumber girls with the disorder by a rate of about three to one. The combined type of ADHD is the most common in elementary school-aged boys; the predominantly inattentive type is found more often in adolescent girls.

While there is no specific data on the rates of ADHD in adults, the disorder is sometimes not diagnosed until adolescence or adulthood, and half of the children with ADHD retain symptoms of the disorder throughout their adult lives. (It is generally believed that older individuals diagnosed with ADHD have had elements of the disorder since childhood.)

What is ADD? Is it different than ADHD? This is a question that has become increasingly difficult to answer simply. ADHD, or attention-deficit/hyperactivity disorder, is the only clinically diagnosed term for disorders characterized by inattention, hyperactivity, and impulsivity used in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorder, Fourth Edition, the diagnostic "bible" of psychiatry. However (and this is where things get tricky), ADD, or attention-deficit disorder, is a term that has become increasingly popular among laypersons, the media, and even some professionals. Some use the term ADD as an umbrella term -- after all, ADHD is an attention-deficit disorder. Others use the term ADD to refer to the predominantly inattentive type of ADHD, since that type does not feature hyperactive symptoms. Lastly, some simply use the terms ADD and ADHD interchangeably. The bottom line is that when people speak of ADD or ADHD, they generally mean the same thing. However, only ADHD is the "official" term.

Is ADHD associated with other disorders? Yes. In fact, symptoms like those of ADHD are often mistaken for or found occurring with other neurological, biological, and behavioral disorders. Nearly half of all children with ADHD (especially boys) tend to also have oppositional defiant disorder, characterized by negative, hostile, and defiant behavior. Conduct disorder (marked by aggression towards people and animals, destruction of property, deceitfulness or theft, and serious rule-breaking) is found to co-occur in an estimated 40 percent of children with ADHD. Approximately one-fourth of children with ADHD (mostly younger children and boys) also experience anxiety and depression. And, at least 25 percent of children with ADHD suffer from some type of communication/learning disability. There is additionally a correlation between Tourette’s syndrome, a neurobiological disorder characterized by motor and vocal tics, and ADHD-only a small percentage of those with ADHD also have Tourette’s, but at least half of those with Tourette’s also have ADHD. Research is also beginning to show that ADHD-like symptoms are sometimes actually manifestations of childhood-onset bipolar disorder.

What causes ADHD? First of all, it is important to realize that ADHD is not caused by dysfunctional parenting, nor is it due to a lack of intelligence or discipline.

Strong scientific evidence supports the conclusion that ADHD is a biologically based disorder. Recently, National Institute of Mental Health researchers using PET scans have observed significantly lower metabolic activity in regions of the brain controlling attention, social judgment, and movement in those with ADHD than in those without the disorder. Biological studies also suggest that children with ADHD may have lower levels of the neurotransmitter dopamine in critical regions of the brain.

Other theories suggest that cigarette, alcohol, and drug use during pregnancy or exposure to environmental toxins such as lead may be linked to the development of ADHD. Research also suggests a strong genetic basis to ADHD -- the disorder tends to run in families. In addition, research has shown that certain forms of genes related to the dopamine neurotransmitter system are linked to increased likelihood of the disorder.

While early theories suggested that ADHD may be caused by minor head injuries or brain damage resulting from infections or complications at birth, research found this hypothesis to lack substantial supportive evidence. Furthermore, scientific studies have not verified dietary factors, another widely discussed possible influence for the development of ADHD, as a main cause of the disorder.

How can ADHD be treated? Many treatments -- some with good scientific basis, some without -- have been recommended for individuals with ADHD. The most proven treatments are medication and behavioral therapy.

Medication Stimulants are the most widely used drugs for treating attention-deficit/hyperactivity disorder. The four most commonly used stimulants are methylphenidate (Ritalin), dextroamphetamine (Dexedrine, Desoxyn), amphetamine and dextroamphetamine (Adderall). These drugs increase activity in parts of the brain that are underactive in those with ADHD, improving attention and reducing impulsiveness, hyperactivity, and/or aggressive behavior. Antidepressants, major tranquilizers, and the antihypertensive clonidine (Catapres) have also proven helpful in some cases. Most recently, the FDA has approved a non- stimulant medication, Atomoxetine (Straterra), a selective norepinephrine reuptake inhibitor for the treatment of ADHD.

Every person reacts to treatment differently, so it is important to work closely and communicate openly with your physician. Some common side effects of stimulant medications include weight loss, decreased appetite, trouble sleeping, and, in children, a temporary slowness in growth; however, these reactions can often be controlled by dosage adjustments. Medication has proven effective in the short-term treatment of more than 76 percent of individuals with ADHD.

Behavioral Therapy Treatment strategies such as rewarding positive behavior changes and communicating clear expectations of those with ADHD have also proven effective. Additionally, it is extremely important for family members and teachers or employers to remain patient and understanding.

Children with ADHD can additionally benefit from caregivers paying close attention to their progress, adapting classroom environments to accommodate their needs, and using positive reinforcers. Where appropriate, parents should work with the school district to plan an individualized education program (IEP).

Other Treatments There are a variety of other treatment options offered (some rather dubious) for those with ADHD. Those treatments not scientifically proven to work include biofeedback, special diets, allergy treatment, megavitamins, chiropractic adjustment, and special-colored glasses.

Reviewed by Peter Jensen, MD May 2003 CLASS THREE Handout #5

Autism Spectrum Disorders

What is Autism Spectrum Disorders? Autism Spectrum Disorders (ASDs) are complex developmental disorders of brain function. Each can affect a child’s ability through signs of impaired social interaction, problems with verbal and nonverbal communication, and unusual or severely limited activities and interest. These symptoms typically appear during the first three years of life. There is no cure for ASDs, but with appropriate early intervention, a child may improve social development and reduce undesirable behaviors.

ASDs affect an estimated two to six per 1,000 children and strike males about four times as often as females. They do not discriminate against racial, ethnic, or social backgrounds. ASDs are “spectrum disorders” that affect individuals differently and to varying degrees. The ASDs are Autism (the defining disorder of the spectrum), Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Rett Syndrome, and Childhood Disintegrative Disorder (CDD). The most severe cases are marked by extremely repetitive, unusual, self-injurious, and aggressive behavior. This behavior may persist over time and prove very difficult to change, posing a tremendous challenge to those who must live with, treat, and teach these individuals. The mildest forms of autism resemble a personality disorder associated with a perceived learning disability.

What are common signs of an ASD? Children diagnosed with an ASD do not embrace the typical patterns of child development. Some hints of future problems may be apparent from birth, while in most cases, signs become evident when a child’s communication and social skills lag further behind other children of the same age. Some parents report the change as being sudden, and that their children start to reject people, act strangely, and lose language and social skills they had previously acquired.

ASDs are defined by a definite set of behaviors that can range from very mild to severe. Children with ASDs may fail to respond to their name and often avoid eye contact. They also have difficulty interpreting tone of voice or facial expressions and do not respond to others’ emotions or watch other people’s faces for cues about appropriate behavior. Many children will engage in repetitive movements such as rocking and hair twirling, or in self-injurious behavior such as nail biting or head-banging. They tend to speak later than other children and may refer to themselves by name instead of “I” or “me.” Some speak in a sing-song voice about a narrow range of favorite topics, with little regard for the interests of the person to whom they are speaking.

In summary, children do not outgrow ASDs, but studies show that early diagnosis and intervention lead to significantly improved outcomes. Signs to look for include:

 Lack of or delay in spoken language (does not babble, point, or make meaningful gestures by one year; does not speak one word by 16 months; does not combine two words by two years; does not respond to name; or loses language or social skill)  Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)  Little or no eye contact  Lack of interest in peer relationships  Lack of spontaneous or make-believe play  Persistent fixation on parts of objects  Does not smile

Symptoms of an ASD do not remain static over a lifetime. About a third of children with an ASD— especially those with severe cognitive impairment and motor deficits—will eventually develop epilepsy. In many children, symptoms of an ASD improve with intervention or as the children mature. Some eventually lead normal or near-normal lives. ASDs in adolescence could worsen behavior problems in some children as they may become depressed or increasingly unmanageable. Parents should be aware and ready to adjust treatment to fit their child’s changing needs.

How is an ASD diagnosed? Although much about ASDs is not known, the consensus is: the earlier the diagnosis, the earlier interventions and treatment can begin. Evidence over the past decade or more indicate that intensive, early intervention in optimal educational settings for at least two years during the preschool years result in improved outcomes in most young children. Currently, no medical test exists to determine if a child has or will develop an ASD. Therefore, when evaluating a child, clinicians rely on behavioral characteristics to make a diagnosis. Some of the characteristic behaviors of ASDs might be apparent in the first few months of a child’s life, but most often they appear at any time during the early years. A clinical diagnosis would come from an observed problem in at least one of the areas of communication, socialization, or restricted behavior before the age of three.

Diagnosis can be difficult for doctors because ASDs vary widely in severity and symptoms, and may go unrecognized, especially in mildly affected individuals or in those with multiple disabilities. Another consideration is that many of the behaviors associated with autism are shared by other disorders. Therefore, various medical tests may be ordered to rule out or identify other possible causes. For this reason, researchers have developed several sets of diagnostic criteria for ASDs. They include:

 Absence or impairment of imaginative and social play  Impaired ability to make friends with peers  Impaired ability to initiate or sustain a conversation with others  Stereotyped, repetitive, or unusual use of language  Restricted patterns of interests that are abnormal in intensity or focus

Diagnosis requires a two-stage process. The first stage involves developmental screening during “well child” check-ups. Several screening instruments have been developed to quickly gather information about a child’s social and communicative development within medical settings.

The second stage of diagnosis must be done by a multidisciplinary team composed of a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals who diagnose children with ASDs.

What are the causes of ASDs? There is no known direct cause of the disorders, which is one of the reasons why ASDs continue to remain elusive to doctors in the field. ASDs are complex disorders and have remained relatively inaccessible for study. It can be said with great certainty, however, that autism is not the direct cause of a psychological disturbance caused by detached or uncaring “refrigerator” mothers, as once suggested in the 1940s by Dr. Bruno Bettleheim. There is also significant evidence from large-scale studies that refute the proposed link between thimerosal, a mercury-based preservative used in the measles-mumps-rubella (MMR) vaccine and autism.

Researchers believe that it is probably a combination of genetic and environmental factors. Studies of people with ASDs have found abnormalities in several regions of the brain, including the cerebellum, amygdala, hippocampus, septum and mamillary bodies. Neurons in these regions appear smaller than normal and have stunted nerve fibers, which may interfere with nerve signaling. This suggests that autism results from a disruption of normal brain development early in fetal development. Other studies suggest that people with an ASD have abnormalities of serotonin or other signaling molecules in the brain. These findings, however, are preliminary and require further study.

In recent studies it has even been suggested that some people have a genetic predisposition to ASDs. Scientists estimate that families with one child living with an ASD run the risk of approximately 5 to 10 percent of having a second child with one of the disorders—greater than the risk for the general population. Research continues into clues about which genes contribute to this increased susceptibility. Parents and other relatives of an autistic person show mild social, communicative, or repetitive behaviors that allow them to function normally but appear linked to ASDs. There is evidence that those who do not have a history with an ASD have a 0.1 to 0.2 percent change that the family will have a child with an ASD.

How are ASDs treated? At present, there is no specific cure for ASDs. Therapies or interventions are designed to remedy specific symptoms in each individual. The best-studied therapies include educational/behavioral and medical interventions, but these remedies do not ensure substantial improvement. The lack of proven treatments prompts many parents to pursue their own research, often using “trial and error.” Parents should use caution before subscribing to any particular treatment. Counseling for the families of people with autism also may assist them in coping with the disorder. While the public has become more aware of ASD in recent years, it still remains one of the lowest funded areas of medical research by both public and private sources.

Educational / Behavioral Interventions Educational and behavioral approaches are often a core feature of the overall treatment plan for children with an ASD. These strategies emphasize highly structured and often intensive, skill-oriented training that is tailored to the individual child. Therapists work with children to help them develop social and language skills. Recent evidence suggests that early intervention has a good change of favorably influencing brain development. Applied behavior (ABA) is the most well-known of the behavioral approaches.

Medication Doctors may prescribe a variety of drugs to reduce self-injurious behavior or other troublesome symptoms of ASDs, as well as associated conditions such as epilepsy and attention disorders. Most of these drugs affect levels of serotonin or other signaling chemicals in the brain. The medications most often used in the treatment of ASDs can generally be placed in one of the following groups: antipsychotic drugs, antidepressants, and stimulants.

How is ASD being studied? There is a growing interest in the scientific field of ASDs as this spectrum of disorders is now affecting 1.5 million American families. The National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health (NIH), is the federal government’s leading supporter of biomedical research on brain and nervous system disorders, including ASDs. The NINDS conducts research in its laboratories at NIH and supports research at other institutions through grants. The Children’s Health Act of 2000 helped create the Interagency Autism Coordinating Committee (IACC), a committee that includes the directors of five NIH institutes to develop a ten-year agenda for autism research. In November 2003, the committee introduced a roadmap to indicate their research priorities for years 1-3, years 4-6, and years 7- 10. The five institutes have also established the Studies to Advance Autism Research and Treatment (STAART) Network, where eight network centers conduct research in the fields of neurobiology, genetics, and psychopharmacology.

The largest collaborative effort to focus on the genetics of autism is being conducted by the NAAR Autism Genome Project. Using the resulting data, scientists will identify genes that demonstrate a link to autism, allowing the medical community to develop treatments.

CLASS THREE Handout #6

DISTRIBUTED BY NAMI New Hampshire New Hampshire’s Voice on Mental Illness National Alliance on Mental Illness page printed from http://www.nami.org/ (800) 242-6264 or (603) 225-5359 1-800-950-NAMI; [email protected]

Child and Adolescent Bipolar Disorder

Can children and adolescents get bipolar disorder? Bipolar disorder can occur in children and adolescents and has been investigated by federally funded teams in children as young as age 6.

How common is it in children and adolescents? Although once thought rare, caseloads of patients examined for federally funded studies have shown that approximately 7% of children seen at psychiatric facilities fit bipolar disorder using research standards.

What are the symptoms of bipolar disorder in children and adolescents? One of the biggest challenges has been to differentiate children with mania from those with attention deficit hyperactivity disorder. Both groups of children present with irritability, hyperactivity and distractibility. So these symptoms are not useful for the diagnosis of mania because they also occur in ADHD. But, elated mood, grandiose behaviors, flight of ideas, decreased need for sleep and hypersexuality occur primarily in mania and are uncommon in ADHD. Below is a brief description of how to recognize these mania specific symptoms in children.

Elated children may laugh hysterically and act infectiously happy without any reason at home, school or in church. If someone who did not know them saw their behaviors, they would think the child was on his/her way to Disneyland. Parents and teachers often see this as "Jim Carey like" behaviors. Grandiose behaviors are when children act as if the rules do not pertain to them. For example, they believe they are so smart that they can tell the teacher what to teach, tell other students what to learn and call the school principal to complain about teachers they do not like. Some children are convinced that they can do superhuman deeds (e.g., that they are Superman) without getting seriously hurt, e.g. "flying" out of windows. Flight of ideas is when children jump from topic to topic in rapid succession when they talk and not just when a special event has happened. Decreased need for sleep is manifested by children who sleep only 4-6 hours and are not tired the next day. These children may stay up playing on the computer and ordering things or rearranging furniture. Hypersexuality can occur in children with mania without any evidence of physical or sexual abuse. These children act flirtatious beyond their years, may try to touch the private areas of adults (including teachers), and use explicit sexual language. In addition, it is most common for children with mania to have multiple cycles during the day from giddy, silly highs to morose, gloomy suicidal depressions. It is very important to recognize these depressed cycles because of the danger of suicide.

What treatments -- medications and psychosocial -- have been shown to be effective for children and adolescents with this condition? At this time there are several ongoing studies of how to best treat children, but until more scientific data is available clinicians are left using their best judgment on how to manage using medications that have been effective in adults. These are largely three main types of drugs -- Lithium, anticonvulsants (e.g., Depakote or other valproate products) and atypical neuroleptics (e.g., risperidone, olanzapine, ziprasidone, aripiprazole, quetiapine).

Are there any side effects associated with these treatments, including those that may only occur in young people? Side effects that are particularly troublesome and that are worse in children include the following. Atypical neuroleptics (except aripiprazloe) are associated with marked weight gain in many children. One day we hope to have specific genetic tests that will tell us beforehand which people will gain weight on these medications. But right now, it is trial and error. The dangers of this weight gain include glucose problems that may include the onset of diabetes and increased blood lipids that may worsen heart and stroke problems later in life. In addition, these drugs can cause an illness called tardive dyskinesia, which is irreversible, unsightly, repeated movements of the tongue in and out of the mouth or cheek and some other movement abnormalities. Depakote may also be associated with increased weight and possibly with a disease called polycystic ovarian syndrome (POS). In some cases POS is associated with infertility later in life. Lithium has been the market the longest and is the only medication that has been shown to be effective against future episodes of mania and of depression and of completed suicides. Some people who take lithium over a long time will need a thyroid supplement and in rare cases may develop serious kidney disease. It is very important that children on these medications be monitored for the development of serious side effects. These side effects need to be weighed against the dangers of the manic-depressive illness itself, which can rob children of their childhood.

How do children and adolescents with this disease fare over time and as adults? At this time, regrettably, the disease appears more severe and with a much longer road to recovery than is seen with adults. While some adults may have episodes of mania or depression with better functioning between episodes, children seem to have continuous illness over months and years.

Does bipolar disorder in children have an impact on educational achievement? It is challenging to educate a child who is seriously too "high" or too "low." Therefore educators need to be aware of the diagnosis and make special arrangements.

Is suicide a risk? Any talk about wanting to die, or asking why they were born or wishing they were never born must be taken very seriously as even quite young children can hang themselves in the shower, shoot themselves or complete suicide by other means.

Reviewed by Barbara Geller, M.D., January 2004

CLASS THREE DISTRIBUTED BY NAMI New Hampshire Handout #7 hildren with New Hampshire’s Voice on Mental Illness (800) 242-6264 or (603) 225-5359

Oppositional Defiant Disorder

All children are oppositional from time to time, particularly when tired, hungry, stressed or upset. They may argue, talk back, disobey, and defy parents, teachers, and other adults. Oppositional behavior is often a normal part of development for two to three year olds and early adolescents. However, openly uncooperative and hostile behavior becomes a serious concern when it is so frequent and consistent that it stands out when compared with other children of the same age and developmental level and when it affects the child's social, family, and academic life.

In children with Oppositional Defiant Disorder (ODD), there is an ongoing pattern of uncooperative, defiant, and hostile behavior toward authority figures that seriously interferes with the youngster's day to day functioning. Symptoms of ODD may include:

 frequent temper tantrums  excessive arguing with adults  active defiance and refusal to comply with adult requests and rules  deliberate attempts to annoy or upset people  blaming others for his or her mistakes or misbehavior  often being touchy or easily annoyed by others  frequent anger and resentment  mean and hateful talking when upset  seeking revenge

The symptoms are usually seen in multiple settings, but may be more noticeable at home or at school. Five to fifteen percent of all school-age children have ODD. The causes of ODD are unknown, but many parents report that their child with ODD was more rigid and demanding than the child's siblings from an early age. Biological and environmental factors may have a role.

A child presenting with ODD symptoms should have a comprehensive evaluation. It is important to look for other disorders which may be present; such as, attention-deficit hyperactive disorder (ADHD), learning disabilities, mood disorders (depression, bipolar disorder) and anxiety disorders. It may be difficult to improve the symptoms of ODD without treating the coexisting disorder. Some children with ODD may go on to develop conduct disorder.

Treatment of ODD may include: Parent Training Programs to help manage the child's behavior, Individual Psychotherapy to develop more effective anger management, Family Psychotherapy to improve communication, Cognitive-Behavioral Therapy to assist problem solving and decrease negativity, and Social Skills Training to increase flexibility and improve frustration tolerance with peers. A child with ODD can be very difficult for parents. These parents need support and understanding. Parents can help their child with ODD in the following ways:

 Always build on the positives, give the child praise and positive reinforcement when he shows flexibility or cooperation.  Take a time-out or break if you are about to make the conflict with your child worse, not better. This is good modeling for your child. Support your child if he decides to take a time-out to prevent overreacting.  Pick your battles. Since the child with ODD has trouble avoiding power struggles, prioritize the things you want your child to do. If you give your child a time-out in his room for misbehavior, don't add time for arguing. Say "your time will start when you go to your room."  Set up reasonable, age appropriate limits with consequences that can be enforced consistently.  Maintain interests other than your child with ODD, so that managing your child doesn't take all your time and energy. Try to work with and obtain support from the other adults (teachers, coaches, and spouse) dealing with your child.  Manage your own stress with exercise and relaxation. Use respite care as needed.

Many children with ODD will respond to the positive parenting techniques. Parents may ask their pediatrician or family physician to refer them to a child and adolescent psychiatrist, who can diagnose and treat ODD and any coexisting psychiatric condition.

American Academy of Child and Adolescent Psychiatry No. 72; Updated December 1999

See also: eAACAP Oppositional Defiant Disorder Resource Center This resource center offers a definition of the disorder, answers to frequently asked questions, and information on getting help.

CLASS THREE Handout #8

DISTRIBUTED BY NAMI New Hampshire New Hampshire’s Voice on Mental Illness (800) 242-6264 or (603) 225-5359

Depression in Children and Adolescents

What is depression? Depression is a disorder characterized by persistent depressed (sad) mood which may last months or even years. It can occur at any age through the lifespan.

We do not yet completely understand the processes in the brain and the mind that lead to or sustain a depression. Some people seem to be a greater genetic risk for depression than others, just like some people are at greater genetic risk for hypertension, obesity, adult-onset diabetes and other "complex" genetic disorders (disorders where the risk is associated with a number of genes each of which somewhat increase the risk rather than diseases associated with a single gene which "causes" the disease). Environmental factors on average have about as much influence on who gets a depression as do genetic factors. Again, this makes depression almost exactly like other similar "complex" genetic disorders with strong environmental contributions (e.g. hypertension, obesity, adult-onset diabetes). Adverse life stresses, perhaps particularly interpersonal "loss" events (e.g. death of a parent) increase the hazard for a depression.

What are the different kinds of depression? Many classification systems have been proposed for depression. However, there is overwhelming evidence for at least two distinct type of depression:

1. Unipolar Depression 2. Bipolar Disorder or Manic Depressive Disorder

Unipolar depression consists of one or more episodes of moderate to severe depression with persistent depressed mood and other symptoms of depression including suicidal ideation, suicide attempts, inability to experience pleasure when doing normally pleasurable activities, impaired concentration, change in appetite, change in weight, difficulty sleeping, and/or increased sleep. The disorder is usually recurrent - if you get it once you are likely to get it again in the future.

Bipolar disorder is characterized by periods of depression essentially identical to that seen in unipolar depression and periods of euphoric (too happy) or extremely irritable mood at the same time as the person has other symptoms of mania including much less need for sleep, very rapid speech, dramatic increase in activities, hypersexuality, and/or "racing" (very rapid and confused) thoughts.

How often do children get depression? About 2% of school-age children (i.e. children 6-12 years of age) appear to have a major depression at any one time. With puberty, the rate of depression increases to about 4% major depression overall. With adolescence, girls, for the first time, have a higher rate of depression than boys. This greater risk for depression in women persists for the rest of life. Depression is diagnosable before school age (e.g. ages 2- 5) where it is somewhat rarer but definitely occurs. Overall, approximately 20% of youth will have one or more episodes of major depression by the time they become adults.

Do children with depression need treatment? Will they just "grow out of it"? Episodes of depression in children appear to last 6-9 months on average but in some children they last for years at a time. When children are in an episode they do less well at school, have impaired relationships with their friends and family, suffer inside, and have an increased risk for attempted and completed suicide. Because there are effective treatments, to ignore it and hope for the best while the child suffers is not a reasonable approach.

How can you tell if your child is depressed? Because the depressed child may not show significant behavioral disturbance, sometimes parents "hope for the best" or fail to get a child evaluated who shows signs of suffering internally but not disrupting the family. What are the treatments for depressed children and adolescents? There are two main groups of treatments for the depressed child with demonstrated evidence of efficacy:

1. Psychotherapy 2. Pharmacotherapy

Because the course of major depression is fluctuating and because there is a general positive effect on the child (or adult) with depression just from the process of seeing and talking with another caring individual about their depression, to say that a treatment is effective we require that it work better than non-specific psychotherapy (e.g. talking to a nice and empathic person) in the case of psychotherapies or placebo medication pills given by a warm and friendly person in the case of pharmacotherapies. Thus, the treatments described below have an additional specific effect as well as all the benefit of the human contact and non- specific discussion of the depression. These are the best we know how to do at present.

The two different specific psychotherapies which show efficacy in children and/or adolescents are cognitive behavioral therapy (CBT) and interpersonal therapy (IPT). CBT concentrates on changing the negative attributional bias (seeing every cup as half-empty) associated with major depression.

Despite a number of studies, there is essentially no evidence to suggest that older-generation tricyclic antidepressants (e.g. Tofranil, Elavil) work for depression in children or adolescents. There are published studies finding efficacy for two SSRIs, fluoxetine (Prozac) and sertraline (Zoloft), in child and adolescent depression. There are ongoing studies and studies which are completed and have been presented at national meetings but not yet published for other antidepressants in child and adolescent major depression. Some of these studies are positive and others have failed to show efficacy (though individual studies frequently fail to find evidence of efficacy even for known effective treatments because of simple bad luck-studies are mathematically much more informative if positive than if negative).

In the middle of 2003 there were FDA (for paroxetine) and pharmaceutical company (for venlafaxine) reports of low but increased rates of impulsive/suicidal behaviors in depressed youth randomized to those active compounds when compared to depressed youth randomized to placebo in the same studies. While there were no completed suicides in these studies in any group, these findings are worrisome and demand increased attention to the question of whether or not some antidepressants may increase the hazard of suicide. At present, the data necessary to understand these studies has not been published or released to the field. OK, what is the right treatment for my depressed child? Given that both psychotherapeutic and pharmacological approaches have demonstrated efficacy, what is the right treatment for a particular child? Ultimately, we don’t have the answer to that question yet though there are two large ongoing multi-site studies which will help us. When considering monotherapy with either talking or pharmacological approaches we do know that all of these approaches have something like a 60% good to excellent clinical response rate which means that many youth do not respond or do not respond adequately to the first treatment and will require augmentation or change of treatment.

Therefore, the youth, family, and clinician should together choose a first treatment that seems best for that individual and give that treatment an adequate trial (e.g. 8-12 weeks). At the end of that time if the treatment isn’t working, it should be changed -- try the treatment for at least two to three months but no longer before evaluating it and modifying or completely scrapping as indicated by the progress.

How long should my child stay on treatment? Medications are typically continued at least 6 months after response before tapering off. Many therapists will decrease the frequency of session but continue some maintenance therapy longer than the initial 8 to 12 weeks of treatment. Treatment for a first episode of depression is likely to last at least 6 to 12 months with either treatment. For recurring depression, many clinicians will maintain prophylactic treatment for considerably longer periods (e.g. years). Reviewed by Neal Ryan, MD September 2003 CLASS THREE Handout #9

Early-Onset Schizophrenia What is schizophrenia? Schizophrenia is a major psychiatric illness. Symptoms usually begin in late adolescence or early adulthood. Numerous studies have found that about 1 in every 100 people around the world has the disorder. However, schizophrenia with an onset in adolescence (prior to age 18) is less common, and an onset of the disorder in childhood (before age 13) is exceedingly rare. It is thought that at most one in every 100 adults with schizophrenia develops it in childhood.

Symptoms and Diagnosis In both adults and children, the symptoms of schizophrenia can be divided into two broad categories -- positive symptoms and negative symptoms.  Positive symptoms include: hallucinations, usually voices which are critical or threatening; delusions, which are firm beliefs that are out of touch with reality and which commonly include the fear that people are watching, harassing, or plotting against the individual; disorganized speech, which is often seen as an inability to maintain a conversation, usually as a result of difficulty staying on topic; or, disorganized or catatonic behavior, which can include behavior that is unusual and bizarre, or can be demonstrated by difficulty planning and completing activities in an organized fashion.  Negative symptoms include: reduction in emotional expression; lack of motivation and energy; or, loss of enjoyment and interest in activities, including social interaction.

Schizophrenia is diagnosed by the presence of two of the symptoms described above. For a diagnosis of schizophrenia, two of these symptoms must be present for at least 6 months and must be accompanied by increased difficulty in daily living in areas such as school, friendships, and self-care.

Hallucinations or delusions in a child should lead to an evaluation by a mental health professional who has experience working with children and adolescents with mental health disorders. A diagnosis of schizophrenia is made through an interview with the child and parents using information obtained from them and from school personnel.

Difficulties in diagnosing schizophrenia Many of the symptoms seen in people with schizophrenia are also found in people with depression, bipolar disorder, or other illnesses. As a result, studies have found that misdiagnosis is common. This is particularly true with children and adolescents. As such, it is extremely important to rule-out other diagnoses such as depression, bipolar disorder, and substance use before making a diagnosis of schizophrenia.

An additional difficulty in making a diagnosis in children and adolescents relates to the fact that hallucinations are surprisingly common and, in fact, are most often seen in children and adolescents with diagnoses other than schizophrenia. In a large study at the National Institutes of Health, the great majority of those previously diagnosed with schizophrenia did not receive that diagnosis following careful evaluation. In many children with other conditions, the nature of the hallucinations is different. While hallucinations in people with schizophrenia are often pervasive when not well treated, many children with other conditions such as mood disorders and dissociative disorders, report auditory hallucinations when they are under stress. These hallucinations tend to be brief and very intermittent (lasting for only a few minutes). Also, children are very susceptible to leading questions and therefore should be asked about symptoms in a neutral fashion (i.e., not "Do you hear voices?").

Children with pervasive developmental disorders (autism, Asperger’s disorder, or an unspecified pervasive developmental disorder) often have social difficulties, disorganized behavior and language impairments. These developmental disorders can be confused with a diagnosis of schizophrenia.

Prognosis of early onset schizophrenia The outcome for children with schizophrenia varies greatly and some individuals function well with medication. Earlier onset is often associated with a poorer outcome when it interferes with attending school and completing an education. However, because children typically live at home with the combined social environments of family and school, symptoms are often recognized early. This fact is significant because recent studies have suggested that earlier treatment may reduce the decline in functioning and long-term impairments commonly associated with schizophrenia. As such, accurate and early intervention and diagnosis are critical.

Treatment for schizophrenia Treatment for schizophrenia includes biological, educational, and social interventions. Medication is the cornerstone of the treatment of schizophrenia, but should be viewed as a means to facilitate psychological and social interventions. Treatment with only medication is not as effective as medication therapy combined with other forms of treatment.

The medications used to treat schizophrenia are termed "anti-psychotics" or "neuroleptics". Although these medications are often effective, they have been associated with significant side effects. The last decade has seen the introduction of a number of new anti-psychotics with reduced side effects. The most commonly used medications used now are: risperidone (Risperdal), olanzapine (Zyprexa), and quetiapine (Seroquel). Other medications include haloperidol (Haldol), thioridazine (Mellaril), and chlorpromazine (Thorazine). For individuals who are not responsive to the previous trials of anti-psychotics, including olanzapine, clozapine (Clozaril) is an important option for children and teenagers, but is not used as a first treatment due to significant side-effects (see below). For some children with refractory psychosis, clozapine proves to be the only medication that helps. We have been able, with careful monitoring, to manage side effects in our children on clozapine, should side effects occur. It is also important that associated symptoms be recognized and treated appropriately. For example, individuals with schizophrenia who develop depression or anxiety should be treated for these symptoms.

Children and adolescents with schizophrenia often need adjustments to their educational programs. Typically this would include smaller classrooms with teachers who are experienced with children and adolescents with psychiatric disorders. Their academic work may also need to be modified in order to accommodate problems sometimes associated with schizophrenia such as reduced concentration and attention.

Social difficulties are commonly seen with early onset schizophrenia. These include difficulty making and keeping friends, difficulty with interpersonal interactions, and low frustration tolerance. Activities to develop social skills are integral to the treatment of schizophrenia. In addition, family therapy and education about schizophrenia may help family members to cope with the child’s illness.

Common side effects of anti-psychotic medications Every youth will have a different reaction to any medication--be it an antibiotic or an anti-psychotic. Nonetheless, the most common problem that children and adolescents report when taking the new generation of anti-psychotic medications (olanzapine and risperidone, for example) is weight gain. This can be problematic because teens are particularly sensitive about how they look. Common side effects of the older class of antipsychotics, such as the more commonly-used and less expensive haloperidol (Haldol), include drowsiness; and neuroleptic side effects such as acute extrapyramidal side effects and tardive dyskenesia. Approximately 1% of those taking clozapine (Clozaril) will develop a serious side -effect called agranulocytosis; thus, regular monitoring of blood levels is essential.

Research and new treatments Much research and development of new medications for schizophrenia is underway. Some promising medications have very different mechanisms of action and so may be more effective with fewer side effects. However, the process of drug development and approval is slow and many of these medications are only currently available in research studies. Several centers around the country are involved in research with these new medications.

Reviewed by Julia Tossell, September 2003 CLASS THREE Handout #10 Obsessive Compulsive Disorder (OCD)

 A woman visits her dermatologist, complaining of extremely dry skin and seldom feeling clean. She showers for two hours every day.

 A lawyer insists on making coffee several times each day. His colleagues do not realize that he lives in fear that the coffee will be poisoned, and he feels compelled to pour most of it down the drain. The lawyer is so obsessed with these thoughts that he spends 12 hours a day at work -- four of them worrying about contaminated coffee.

 A man cannot bear to throw anything away. Junk mail, old newspapers, empty milk cartons all "could contain something valuable that might be useful someday." If he throws things away, "something terrible will happen." He hoards so much clutter that he can no longer walk through his house. Insisting that nothing be thrown away, he moves to another house where he continues to hoard.

These people suffer obsessive-compulsive disorder (OCD). The National Institute of Mental Health estimates that more than 2 percent of the U.S. population, or nearly one out of every 40 people, will suffer from OCD at some point in their lives. The disorder is two to three times more common than schizophrenia and bipolar disorder.

What is Obsessive-compulsive disorder? Obsessions are intrusive, irrational thoughts -- unwanted ideas or impulses that repeatedly well up in a person's mind. Again and again, the person experiences disturbing thoughts, such as "My hands must be contaminated; I must wash them"; "I may have left the gas stove on"; "I am going to injure my child." On one level, the sufferer knows these obsessive thoughts are irrational. But on another level, he or she fears these thoughts might be true. Trying to avoid such thoughts creates great anxiety.

Compulsions are repetitive rituals such as hand washing, counting, checking, hoarding, or arranging. An individual repeats these actions, perhaps feeling momentary relief, but without feeling satisfaction or a sense of completion. People with OCD feel they must perform these compulsive rituals or something bad will happen.

Most people at one time or another experience obsessive thoughts or compulsive behaviors. Obsessive- compulsive disorder occurs when an individual experiences obsessions and compulsions for more than an hour each day, in a way that interferes with his or her life.

OCD is often described as "a disease of doubt." Sufferers experience "pathological doubt" because they are unable to distinguish between what is possible, what is probable, and what is unlikely to happen.

Who gets OCD? People from all walks of life can get OCD. It strikes people of all social and ethnic groups and both males and females. Symptoms typically begin during the teenage years or young adulthood.

What causes OCD? A large body of scientific evidence suggests that OCD results from a chemical imbalance in the brain. For years, mental health professionals incorrectly assumed OCD resulted from bad parenting or personality defects. This theory has been disproven over the last 20 years. OCD symptoms are not relieved by psychoanalysis or other forms of "talk therapy," but there is evidence that behavior therapy can be effective, alone or in combination with medication. People with OCD can often say "why" they have obsessive thoughts or why they behave compulsively. But the thoughts and the behavior continue.

People whose brains are injured sometimes develop OCD, which suggests it is a physical condition. If a placebo is given to people who are depressed or who experience panic attacks, 40 percent will say they feel better. If a placebo is given to people who experience obsessive-compulsive disorder, only about two percent say they feel better. This also suggests a physical condition.

Clinical researchers have implicated certain brain regions in OCD. They have discovered a strong link between OCD and a brain chemical called serotonin. Serotonin is a neurotransmitter that helps nerve cells communicate.

Scientists have also observed that people with OCD have increased metabolism in the basal ganglia and the frontal lobes of the brain. This, scientists believe, causes repetitive movements, rigid thinking, and lack of spontaneity. People with OCD often have high levels of the hormone vasopressin. In layperson's terms, something in the brain is stuck, like a broken record. Judith Rapoport, M.D., describes it in her book, The Boy Who Couldn't Stop Washing, as "grooming behaviors gone wild."

How do people with OCD typically react to their disorder? People with OCD generally attempt to hide their problem rather than seek help. Often they are remarkably successful in concealing their obsessive-compulsive symptoms from friends and co-workers. An unfortunate consequence of this secrecy is that people with OCD generally do not receive professional help until years after the onset of their disease. By that time, the obsessive-compulsive rituals may be deeply ingrained and very difficult to change.

How long does OCD last? OCD will not go away by itself, so it is important to seek treatment. Although symptoms may become less severe from time to time, OCD is a chronic disease. Fortunately, effective treatments are available that make life with OCD much easier to manage.

Is age a factor in OCD? OCD usually starts at an early age, often before adolescence. It may be mistaken at first for autism, pervasive developmental disorder, or Tourette's syndrome, a disorder that may include obsessive doubting and compulsive touching as symptoms. Like depression, OCD tends to worsen as the person grows older, if left untreated. Scientists hope, however, that when the OCD is treated while the person is still young, the symptoms will not get worse with time.

What are other examples of behaviors typical of people who suffer from OCD? People who do the following may have OCD:  repeatedly check things, perhaps dozens of times, before feeling secure enough to go to sleep or leave the house. Is the stove off? Is the door locked? Is the alarm set?  fear they will harm others. Example: A man's car hits a pothole on a city street and he fears it was actually a body.  feel dirty and contaminated. Example: A woman is fearful of touching her baby because she might contaminate the child.  constantly arrange and order things. Example: A child can't go to sleep unless he lines up all his shoes correctly.  are excessively concerned with body imperfections -- insist on numerous plastic surgeries, or spend many, many hours a day body-building.  are ruled by numbers, believing that certain numbers represent good and others represent evil.  are excessively concerned with sin or blasphemy.

Is OCD commonly recognized by professionals? Not nearly commonly enough. OCD is often misdiagnosed, and it is often underdiagnosed. Many people have dual disorders of OCD and schizophrenia, or OCD and bipolar disorder, but the OCD component is not diagnosed or treated. Researchers believe OCD, anxiety disorders, Tourette's, and eating disorders such as anorexia and bulimia can be triggered by some of the same chemical malfunctioning of the brain.

Is heredity a factor in OCD? Yes. Heredity appears to be a strong factor. If you have OCD, there's a 25-percent chance that one of your immediate family members will have it. It definitely seems to run in families.

Can OCD be effectively treated? Yes, with medication and behavior therapy. Both affect brain chemistry, which in turn affects behavior. Medication can regulate serotonin, reducing obsessive thoughts and compulsive behaviors.

Anafranil (clomipramine): A tricyclic antidepressant, Anafranil has been shown to be effective in treating obsessions and compulsions. The most commonly reported side effects of this medication are dry mouth, constipation, nausea, increased appetite, weight gain, sleepiness, fatigue, tremor, dizziness, nervousness, sweating, visual changes, and sexual dysfunction. There is also a risk of seizures, thought to be dose-related. People with a history of seizures should not take this medication. Anafranil should also not be taken at the same time as a monoamine oxidase inhibitor (MAOI).

Many of the antidepressant medications known as selective serotonin reuptake inhibitors (SSRIs) have also proven effective in treating the symptoms associated with OCD. The SSRIs most commonly prescribed for OCD are Luvox (fluvoxamine), Paxil (paroxetine), Prozac (fluoxetine), and Zoloft (sertraline).

Luvox (fluvoxamine): Common side effects of this medication include dry mouth, constipation, nausea, sleepiness, insomnia, nervousness, dizziness, headache, agitation, weakness, and delayed ejaculation.

Paxil (paroxetine): Side effects most associated with this medication include dry mouth, constipation, nausea, decreased appetite, sleepiness, insomnia, tremor, dizziness, nervousness, weakness, sweating, and sexual dysfunction.

Prozac (fluoxetine): Dry mouth, nausea, diarrhea, sleepiness, insomnia, tremor, nervousness, headache, weakness, sweating, rash, and sexual dysfunction are among the more common side effects associated with this drug.

Zoloft (sertraline): Among the side effects most commonly reported while taking Zoloft are dry mouth, nausea, diarrhea, constipation, sleepiness, insomnia, tremor, dizziness, agitation, sweating, and sexual dysfunction.

SSRIs should never be taken at the same time as MAOIs.

How long should an individual take medication before judging its effectiveness? Some physicians make the mistake of prescribing a medication for only three or four weeks. That really isn't long enough. Medication should be tried consistently for 10 to 12 weeks before its effectiveness can be judged.

What is behavior therapy, and can it effectively relieve symptoms of OCD? Behavior therapy is not traditional psychotherapy. It is "exposure and response prevention," and it is effective for many people with OCD. Consumers are deliberately exposed to a feared object or idea, either directly or by imagination, and are then discouraged or prevented from carrying out the usual compulsive response. For example, a compulsive hand-washer may be urged to touch an object he or she believes is contaminated and denied the opportunity to wash for several hours. When the treatment works well, the consumer gradually experiences less anxiety from the obsessive thoughts and becomes able to refrain from the compulsive actions for extended periods of time.

Several studies suggest that medication and behavior therapy are equally effective in alleviating symptoms of OCD. About half of the consumers with this disorder improve substantially with behavior therapy; the rest improve moderately.

Will OCD symptoms go away completely with medication and behavior therapy? Response to treatment varies from person to person. Most people treated with effective medications find their symptoms reduced by about 40 percent to 50 percent. That can often be enough to change their lives, to transform them into functioning individuals.

A few consumers find that neither treatment produces significant change, and a small number of people are fortunate to go into total remission when treated with effective medication and/or behavior therapy.

For further information: Call the NAMI HelpLine at 1-800-950-6264 to request a free copy of, "Expert Consensus Treatment Guidelines for Obsessive-Compulsive Disorder: A Guide For Patients and Families," or download this guide from www.psychguides.com. The Boy Who Couldn't Stop Washing, by Judith L. Rapoport, M.D. New American Library, 1977. Obsessive-Compulsive Disorder: The Facts, by Padmal de Silva and Stanley Rachman. Oxford University Press, 1998. Polly's Magic Games: A Child's View of Obsessive-Compulsive Disorder, by Constance H. Foster. Illustrated by Edwin A. Chase. Dilligaf Publishing, 1994. Tormenting Thoughts and Secret Rituals: The Hidden Epidemic of Obsessive-Compulsive Disorder, by Ian Osborn, M.D. Delacorte Press, 1999.

Organizations: National Institute of Mental Health Obsessive-Compulsive Foundation Phone: 301-443-4513 Phone: 203-315-2190 Web site: www.nimh.nih.gov Web site: www.ocfoundation.org

Fact sheet information from Teri Pigott, M.D., Georgetown University and the National Institute of Mental Health, and Mary Lynn Hendrix, National Institute of Mental Health, and reviewed by Jack D. Maser, Ph.D., chief, Anxiety Disorders Program, National Institute of Mental Health. CLASS THREE Handout #11

DISTRIBUTED BY NAMI New Hampshire New Hampshire’s Voice on Mental Illness

(800) 242-6264 or (603) 225-5359 National Alliance on Mental Illness page printed from http://www.nami.org/ 1-800-950-NAMI; [email protected]

Post-Traumatic Stress Disorder Research Fact Sheet

Post-Traumatic Stress Disorder (PTSD) is an anxiety disorder that some people develop after seeing or living through an event that caused or threatened serious harm or death. Symptoms include flashbacks or bad dreams, emotional numbness, intense guilt or worry, angry outbursts, feeling “on edge,” or avoiding thoughts and situations that remind them of the trauma. In PTSD, these symptoms last at least one month.

To aid those who suffer with PTSD, the National Institute of Mental Health (NIMH) is supporting PTSD-focused research, and related studies on anxiety and fear, to find better ways of helping people cope with trauma, as well as better ways to treat and ultimately prevent the disorder. This research fact sheet will highlight several important areas that NIMH researchers have recently learned about:

 possible risk factors,  treating the disorder, and  next steps for PTSD research.

For more information about PTSD, please see the NIMH Post-Traumatic Stress Disorder booklet. You can also find a list of places to find more information about PTSD and NIMH at the end of this fact sheet.

Research on Possible Risk Factors for PTSD Currently, many scientists are focusing on genes that play a role in creating fear memories. Understanding how fear memories are created may help to refine or find new interventions for reducing the symptoms of PTSD. For example, PTSD researchers have pinpointed genes that make:

 Stathmin, a protein needed to form fear memories. In one study, mice that did not make stathmin were less likely than normal mice to “freeze,” a natural, protective response to danger, after being exposed to a fearful experience. They also showed less innate fear by exploring open spaces more willingly than normal mice.1  GRP (gastrin-releasing peptide), a signaling chemical in the brain released during emotional events. In mice, GRP seems to help control the fear response, and lack of GRP may lead to the creation of greater and more lasting memories of fear.2

Researchers have also found a version of the 5-HTTLPR gene, which controls levels of serotonin — a brain chemical related to mood-that appears to fuel the fear response.3 Like other mental disorders, it is likely that many genes with small effects are at work in PTSD. Studying parts of the brain involved in dealing with fear and stress also helps researchers to better understand possible causes of PTSD. One such brain structure is the amygdala, known for its role in emotion, learning, and memory. The amygdala appears to be active in fear acquisition, or learning to fear an event (such as touching a hot stove), as well as in the early stages of fear extinction, or learning not to fear.4

Storing extinction memories and dampening the original fear response appears to involve the prefrontal cortex (PFC) area of the brain, 4 involved in tasks such as decision-making, problem-solving, and judgment. Certain areas of the PFC play slightly different roles. For example, when it deems a source of stress controllable, the medial PFC suppresses the amygdala an alarm center deep in the brainstem and controls the stress response.5 The ventromedial PFC helps sustain long-term extinction of fearful memories, and the size of this brain area may affect its ability to do so.

Individual differences in these genes or brain areas may only set the stage for PTSD without actually causing symptoms. Environmental factors, such as childhood trauma, head injury, or a history of mental illness, may further increase a person's risk by affecting the early growth of the brain.7 Also, personality and cognitive factors, such as optimism and the tendency to view challenges in a positive or negative way, as well as social factors, such as the availability and use of social support, appear to influence how people adjust to trauma.8 More research may show what combinations of these or perhaps other factors could be used someday to predict who will develop PTSD following a traumatic event.

Research on Treating PTSD Currently, people with PTSD may be treated with psychotherapy (“talk” therapy), medications, or a combination of the two.

Psychotherapy Cognitive behavioral therapy (CBT) teaches different ways of thinking and reacting to the frightening events that trigger PTSD symptoms and can help bring those symptoms under control. There are several types of CBT, including

 exposure therapy — uses mental imagery, writing, or visiting the scene of a trauma to help survivors face and gain control of overwhelming fear and distress  cognitive restructuring — encourages survivors to talk about upsetting (often incorrect) thoughts about the trauma, question those thoughts, and replace them with more balanced and correct ones.  stress inoculation training — teaches anxiety reduction techniques and coping skills to reduce PTSD symptosm, and helps correct inaccurate thoughts related to the trauma.

NIMH is currently studying how the brain responds to CBT compared to sertraline (Zoloft), one of the two medications recommended and approved by the U.S. Food and Drug Administration (FDA) for treating PTSD. This research may help clarify why some people respond well to medication and others to psychotherapy

Medications In a small study, NIMH researchers recently found that for people already taking a bedtime dose of the medication prazosin (Minipress), adding a daytime dose helped to reduce overall PTSD symptom severity, as well as stressful responses to trauma reminders.9 Another medication of interest is D-cycloserine (Seromycin), which boosts the activity of a brain chemical called NMDA, which is needed for fear extinction. In a study of 28 people with a fear of heights, scientists found that those treated with D-cycloserine before exposure therapy showed reduced fear during the therapy sessions compared to those who did not receive the drug.10 Researchers are currently studying the effects of using D-cycloserine with therapy to treat PTSD.

Propranolol (Inderal), a type of medicine called a beta-blocker, is also being studied to see if it may help reduce stress following a traumatic event and interrupt the creation of fearful memories. Early studies have successfully reduced or seemingly prevented PTSD in small numbers of trauma victims.11

Treatment After Mass Trauma NIMH researchers are testing creative approaches to making CBT widely available, such as with Internet- based self-help therapy and telephone-assisted therapy. Less formal treatments for those experiencing acute stress reactions are also being explored to reduce chances of developing full blown PTSD

For example, in one preliminary study, researchers created a self-help website using concepts of stress inoculation training. People with PTSD first met face-to-face with a therapist. After this meeting, participants could log onto the website to find more information about PTSD and ways to cope, and their therapists could also log on to give advice or coaching as needed. Overall, the scientists found delivering therapy this way to be a promising method for reaching a large number of people suffering with PTSD symptoms.12

Researchers are also working to improve methods of screening, providing early treatment, and tracking mass trauma survivors; and approaches for guiding survivors through self-evaluation/screening and prompting referral to mental health care providers based on need.

The Next Steps for PTSD Research In the last decade, rapid progress in research on the mental and biological foundations of PTSD has lead scientists to focus on prevention as a realistic and important goal.

For example, NIMH-funded researchers are exploring new and orphan medications thought to target underlying causes of PTSD in an effort to prevent the disorder. Other research is attempting to enhance cognitive, personality, and social protective factors and to minimize risk factors to ward off full-blown PTSD after trauma. Still other research is attempting to identify what factors determine whether someone with PTSD will respond well to one type of intervention or another, aiming to develop more personalized, effective and efficient treatments.

The examples described here are only a small sampling of the ongoing work at NIMH. To find more information about ongoing PTSD clinical studies, see NIMH's PTSD clinical trials Web page. As gene research and brain imaging technologies continue to improve, scientists are more likely to be able to pinpoint when and where in the brain PTSD begins. This understanding may then lead to better targeted treatments to suit each person's own needs or even prevent the disorder before it causes harm.

Where Can I Get More Information? MedlinePlus, a service of the U.S. National Library of Medicine and the National Institutes of Health, provides updated information and resource lists for many health topics, including post-traumatic stress disorder (PTSD) (En Español) References

1. Shumyatsky GP, Malleret G, Shin RM, et al. stathmin, a Gene Enriched in the Amygdala, Controls Both Learned and Innate Fear. Cell. Nov 18 2005; 123(4):697-709.

2. Shumyatsky GP, Tsvetkov E, Malleret G, et al. Identification of a signaling network in lateral nucleus of amygdala important for inhibiting memory specifically related to learned fear. Cell. Dec 13 2002; 111(6):905-918.

3. Hariri AR, Mattay VS, Tessitore A, et al. Serotonin transporter genetic variation and the response of the human amygdala. Science. Jul 19 2002; 297(5580):400-403

4. Milad MR, Quirk GJ. Neurons in medial prefrontal cortex signal memory for fear extinction. Nature. Nov 7 2002; 420(6911):70-74.

5. Amat J, Baratta MV, Paul E, Bland ST, Watkins LR, Maier SF. Medial prefrontal cortex determines how stressor controllability affects behavior and dorsal raphe nucleus. Nat Neurosci. Mar 2005; 8(3):365-371.

6. Gurvits TV, Gilbertson MW, Lasko NB, et al. Neurologic soft signs in chronic posttraumatic stress disorder. Arch Gen Psychiatry. Feb 2000; 57(2):181-186.

7. Brewin CR. Risk factor effect sizes in PTSD: what this means for intervention. J Trauma Dissociation. 2005; 6(2):123-130.

8. Taylor FB, Lowe K, Thompson C, et al. Daytime Prazosin Reduces Psychological Distress to Trauma Specific Cues in Civilian Trauma Posttraumatic Stress Disorder. Biol Psychiatry. Feb 3 2006.

9. Ressler KJ, Rothbaum BO, Tannenbaum L, et al. Cognitive enhancers as adjuncts to psychotherapy: use of D-cycloserine in phobic individuals to facilitate extinction of fear. Arch Gen Psychiatry. Nov 2004; 61(11):1136-1144.

10. Pitman RK, Sanders KM, Zusman RM, et al. Pilot study of secondary prevention of posttraumatic stress disorder with propranolol. Biol Psychiatry. Jan 15 2002; 51(2):189-192.

11. Litz BT WL, Wang J, Bryant R, Engel CC. A therapist-assisted Internet self-help program for traumatic stress. Prof Psychol Res Pr. December 2004; 35(6):628-634.

Information from NIMH is available online, in PDF, or as paper brochures sent through the mail. If you would like to have NIMH publications, you can order them at http://www.nimh.nih.gov or contact NIMH at the numbers listed below.

National Institute of Mental Health, Office of Science Policy, Planning, and Communications 6001 Executive Boulevard, Room 8184, MSC 9663, Bethesda, MD 20892-9663 Phone: 301-443- 4513, 1-866-615-NIMH (6464) toll-free; TTY: 1-866-415-8051 toll free mail: [email protected].

CLASS THREE Handout #12

DISTRIBUTED BY NAMI New Hampshire New Hampshire’s Voice on Mental Illness National Alliance on Mental Illness (800) 242-6264 or (603) 225-5359 page printed from http://www.nami.org/ 1-800-950-NAMI; [email protected]

Borderline Personality Disorder

What is Borderline Personality Disorder

Borderline Personality Disorder (BPD) is an often misunderstood, serious mental illness characterized by pervasive instability in moods, interpersonal relationships, self-image and behavior. It is a disorder of emotional dysregulation. This instability often disrupts family and work, long-term planning and the individual’s sense of self-identity. While less well known than schizophrenia or bipolar disorder (manic- depressive illness), BPD is just as common, affecting between 1 - 2 percent of the general population.

The disorder, characterized by intense emotions, self-harming acts and stormy interpersonal relationships, was officially recognized in 1980 and given the name Borderline Personality Disorder. It was thought to occur on the border between psychotic and neurotic behavior. This is no longer considered a relevant analysis and the term itself, with its stigmatizing negative associations, has made diagnosing BPD problematic. The complex symptoms of the disorder often make patients difficult to treat and therefore may evoke feelings of anger and frustration in professionals trying to help, with the result that many professionals are often unwilling to make the diagnosis or treat persons with these symptoms. These problems have been aggravated by the lack of appropriate insurance coverage for the extended psychosocial treatments that BPD usually requires. Nevertheless, there has been much progress and success in the past 25 years in the understanding of and specialized treatment for BPD. It is, in fact, a diagnosis that has a lot of hope for recovery.

What are the Symptoms of Borderline Personality Disorder?

Borderline Personality Disorder Diagnosis: DSM IV Diagnostic Criteria

A pervasive pattern of instability of interpersonal relationships, self-image and affects, and marked impulsivity beginning by early adulthood ** and present in a variety of contexts, as indicated by five (or more) of the following:

1. Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-mutilating behavior*** covered in Criterion 5.

2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation.

3. Identity disturbance: markedly and persistently unstable self-image or sense of self. 4. Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). Note: Do not include suicidal or self-mutilating behavior*** covered in Criterion 5.

5. Recurrent suicidal behavior, gestures or threats, or self-mutilating behavior.***

6. Affective [mood] instability.

7. Chronic feelings of emptiness.

8. Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).

9. Transient, stress-related paranoid ideation or severe dissociative symptoms.

*Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association.

**Data collected informally from many families indicate this pattern of symptoms may appear as early as the pre-teens.

***The preferred term is self-harm or self-injury.

Important Considerations about Borderline Personality Disorder

1. The five of nine criteria needed to diagnose the disorder may be present in a large number of different combinations. This results in the fact that the disorder often presents quite differently from one person to another, thus making accurate diagnosis somewhat confusing to a clinician not skilled in the area.

2. BPD rarely stands along. There is high co-occurrence with other disorders.

3. BPD affects between 1-2 percent of the population. The highest estimation, 2 percent, approximates the number of persons diagnosed with schizophrenia and bipolar disorder.

4. Estimates are 10 percent of outpatients and 20 percent of inpatients who present for treatment have BPD.

5. More females are diagnosed with BPD than males by a ratio of about 3-to-1, though some clinicians suspect that males are underdiagnosed.

6. 75 percent of patients self-injure.

7. Approximately 10 percent of individuals with BPD complete suicide attempts.

8. A chronic order that is resistant to change, we now know that BPD has good prognosis when treated properly. Such treatment usually consists of medications, psychotherapy and educational and support groups.

9. In many patients with BPD, medications have been shown to be very helpful in reducing the severity of symptoms and enabling effective psychotherapy to occur. Medications are also often essential in the proper treatment of disorders that commonly co-occur with BPD. 10. There are a growing number of psychotherapeutic approaches specifically developed for people with BPD. Dialectical behavioral therapy (DBT) is a relatively recent treatment, developed by Marsha Linehan, Ph.D. To date, DBT is the best-studied intervention for BPD. Find out more about DBT in NAMI’s Borderline Personality Disorder Brochure.

11. These and other treatments have been shown to be effective in the treatment of BPD, and MANY PATIENTS DO GET BETTER!

Theories of Origins and Pathology of Borderline Personality Disorder

At this point in time, clinical theorists believe that biogenetic and environmental components are both necessary for the disorder to develop. These factors are varied and complex. Many different environments may further contribute to the development of the disorder. Families providing reasonably nurturing and caring environments may nevertheless see their relative develop the illness. In other situations, childhood abuse has exacerbated the condition. The best explanation appears to be that there is a confluence of environmental factors and a neurobiological propensity that leads to a sensitive, emotionally labile child.

Co-occurring Disorders

Borderline Personality Disorder rarely stands along. BPD occurs with, and complicates, other disorders.

Co-morbidity with other disorders:

Major Depressive Disorder -- 60 percent

Dysthymia (chronic, moderate to mild depression -- 70 percent

Eating Disorders -- 25 percent

Substance Abuse -- 35 percent

Bipolar Disorder -- 15 percent

Antisocial Personality Disorder -- 25 percent

Narcissistic Personality Disorder -- 25 percent

Treatment

One of the preliminary questions confronting families/friends is how and when to place confidence in those responsible for treating the patient. Generally speaking, the more clinical experience the treatment provider has had working with borderline patients, the better. Most often, a good “fit” with the primary therapist is the “key” to successful therapy intervention.

A discussion of hospitalization and treatment techniques, including specialized treatment for BPD, follows:

A. Hospitalization: Hospitalization in the care of those with BPD is usually restricted to the management of crises (including, but not limited to, situations where the individual’s safety is at risk). It is not uncommon for medication changes to take place in the context of a hospital stay, where professionals can monitor the impact of new medications in a controlled environment. Hospitalizations are usually short in duration.

B. Medications play an important role in the comprehensive treatment of BPD. For more on this topic, refer to the section on this website "Medications Used and Studied in the Treatment of BPD".

C. Psychotherapy: Psychotherapy is the cornerstone of most treatments for Borderline Personality Disorder. Although development of a secure attachment to the therapist is generally essential for the psychotherapy to have useful effects, this does not occur easily with the BPD diagnosed individual, given the intense needs and fears about relationships. The standard recommendation for individual psychotherapy involves one to two visits a week with an experienced clinician. The symptoms of the disorder can be as difficult for professionals to experience as those experienced by family members. Some therapists are apprehensive about working with individuals with this diagnosis.

There are currently three major psychotherapeutic approaches to treatment of BPD:

1. Psychodynamic

2. Cognitive-behavioral

3. Supportive

D. Group Modalities: DBT and CBT interventions are often like classes with much focus and direction offered by the group leader(s) and with homework/practice exercises assigned between sessions based on the material presented during the session. DBT, for example has a manual that is followed each week where both the lectures and the practice exercises are put together for easy access. Some patients with BPD may be resistant to interpersonal or psychodynamic groups which require the expression of strong feelings or the need for personal disclosures. However, such forums may be useful for these very reasons. Moreover, such groups offer an opportunity for borderline patients to learn from persons with similar life experiences, which, in conjunction with the other modalities discussed here, can significantly enhance the treatment course. Many individuals with BPD find it more acceptable to join self-help groups, such as AA. Self-help groups that provide a network of supportive peers can be useful as an adjunct to treatment, but should not be relied on as the sole source of support.

E. Family Therapy: Parents, spouses and children bear a significant burden. Often, family members are grateful to be educated about the borderline diagnosis, the likely prognosis, reasonable expectations from treatment, and how they can contribute. These interventions often improve communication, decrease alienation, and relieve family burdens. Some mental disorders, as in the treatment of schizophrenia, require close family involvement in the treatment process to be optimally effective. There are now preliminary research data that suggest that family involvement is also very important in the effective treatment of borderline disorder.

Several organizations offer education programs and/or support to families challenged with mental health issues. The National Alliance on Mental Illness (NAMI), The National Educational Alliance for Borderline Personality Disorder (NEA-BPD), The Depression and Bipolar Support Association (DBSA) and the Mental Health Association (MHA) offer programs across the nation.

Family training and support programs such as NAMI’s Family-to-Family and NEA; BPD’s Family Connections (www.neabpd.org) are in great demand. Nonetheless, too often many psychiatrists and other mental health clinicians continue to deny meaningful input from family members of a client with BPD. This situation is especially frustrating for family members, who often provide the sole financial support for everyday living and treatment expenses, and much of the moral support, but who receive little or no response from the treating professionals. Families are especially distressed when the treatment plan is not effective, and their loved one isolates them from their therapists. Given the importance of the family in establishing functional relationships in the lives of people with borderline disorder, families should actively seek “family friendly” treatments and/or treatment providers and investigate family classes and support groups in their communities.

Suicidality and Self-harming Behavior

The most dangerous and fear-inducing features of BPD are the self-harm behaviors and potential for suicide. An estimated 10 percent kill themselves. Deliberate self-harming (cutting, burning, hitting, head banging, hair pulling) is a common feature of BPD. Individuals who self-harm report that causing themselves physical pain generates a sense of release and relief which temporarily alleviates excruciating emotional feelings. Self-injurious acts can bring relief by stimulating production of endorphins, which are naturally occurring opiates produced by the brain in response to pain. Some individuals with BPD also exhibit self-destructive acts such as promiscuity, bingeing, purging and blackouts from substance abuse.

It is important for the client, family, and clinician to be able to draw a distinction between the intent behind suicide attempts and self-injurious behaviors (SIB). Patients and researchers frequently describe self- injurious behavior as a means of reducing intense feelings of emotional pain. The release of the endogenous opiates provides a reward to the behavior. Some data suggest that self-injurious behavior in BPD patients doubles the risk of suicide attempts. This dichotomy of intent between these two behaviors requires careful evaluation and relevant therapy to meet the needs of the patient.

Medications Studied and Used in the Treatment of Borderline Personality Disorder

There are two reasons why medications are used in the treatment of BPD. First, they have proven to be very helpful in stabilizing the emotional reactions, reducing impulsivity, and enhancing thinking and reasoning abilities in people with the disorder. Second, medications are also effective in treating the other emotional disorders that are frequently associated with borderline disorder like depression and anxiety.

The group of medications that have been studied most for the treatment of borderline disorder are neuroleptics and atypical antipsychotic agents. At their usual doses, these medications are very effective in improving the disordered thinking, emotional responses, and behavior of people with other mental disorders, such as bipolar disorder and schizophrenia. However, at smaller doses they are helpful in decreasing the over-reactive emotional responses and impulsivity, and in improving the abilities to think and reason for people with BPD. Low doses of these medications often reduce depressed moods, anger, and anxiety, and decrease the severity and frequency of impulsive actions. In addition, clients with borderline disorder report a considerable improvement in their ability to think rationally. There’s also a reduction, or elimination of, paranoid thinking, if this is a problem.

Medications Studied and Used in the Treatment of Borderline Disorder is adapted from the book, "Borderline Personality Disorder Demystified " by Dr. Robert O. Friedel, Marlowe & Co., 2004

Side Effects of Medications Used to Treat Borderline Personality Disorder

All medications have side effects. Different medications produce different side effects, and people differ in the amount and severity of side effects they experience. Side effects can often be treated by changing the dose of the medication or switching to a different medication. Antidepressants may cause dry mouth, constipation, bladder problems, sexual problems, blurred vision, dizziness, drowsiness, skin rash, or weight gain or loss. One class of antidepressants, the monoamine oxidase inhibitors (MAOIs) have strict food restrictions with the consequence of life threatening elevation of blood pressure. The SSRIs and newer antidepressants tend to have fewer and different side effects such as nausea, nervousness, insomnia, diarrhea, rash, agitation, sexual problems, or weight gain or loss. Mood stabilizers could cause side effects of nausea, drowsiness, dizziness and possibly tremors. Some require periodic blood tests to monitor liver function and blood cell count.

The group of medications that have been studied most for the treatment of borderline disorder are neuroleptics and atypical antipsychotic agents. The neuroleptics were the first generation of medications used to treat psychotic disorders. The atypical antipsychotics are the second generation of medications developed to treat psychotic disorders. A specific side-effect the neuroleptics may produce is called tardive dyskinesia. This is an abnormal, involuntary movement disorder that typically occurs in those receiving average to large doses of neuroleptics. The risk appears to be less with low doses of neuroleptics or the atypical antipsychotic agents. Atypical antipsychotics and/or traditional narcoleptics could have the ability to produce weight gain, drowsiness, insomnia, breast engorgement and discomfort, lactation, and restlessness. Some of the side-effects are temporary and others are persistent. Before starting on a traditional neuroleptic or atypical antipsychotic, review the side-effect profile with the treating psychiatrist.

A portion of the above material provided with permission from:

Borderline Personality Disorder Demystified by Robert O. Friedel, M.D., Marlowe & Co., 2004

National Education Alliance for Borderline Personality Disorder’s Teachers Manual for Family Connections, 2006

A BPD Brief, An Introduction to Borderline Personality Disorder by John G. Gunderson, M.D., 2006

Related Resources

A BPD Brief: An Introduction to Borderline Personality Disorder Read an introduction to Borderline Personality Disorder which includes information on diagnosis, origins, course, and treatment.

Basic Library on Borderline Personality Disorder Robert O. Friedel, M.D. author of Borderline Personality Disorder Demystified, and www.BPDdemystified.com shares a list of books on Borderline Personality Disorder.

Substance-Use Disorders Co-Occurring with Borderline Disorder Fact sheet by Dr. Robert Friedel on substance abuse and borderline personality disorder. Self-Injurious Behaviors and Suicidality in Borderline Disorder Fact sheet by Dr. Robert Friedel on self injurious behaviors and suicide in individuals with borderline personality disorder.

Early Sea Changes in Borderline Personality Disorder Article by Dr. Robert Friedel on the sea changes in research and practice in the field of borderline personality disorder.

More Resources...

Mental Illness Discussion Groups Dozens of online groups for consumers, parents, spouses, siblings, teens and more. Get connected and find support.

Related Links behavioraltech.org Behavioral Tech, LLC a site founded by Dr. Marsha Linehan.

National Education Alliance for Borderline Personality Disorder (NEA-BPD) A non-profit organization started by family members, consumers, and professionals to educate stake- holders about borderline personality disorder.

National Institute of Mental Health Information from the NIH institute on borderline personality disorder. www.bpdcentral.org BDPCLASS Central, THREE a site founded by author Randi Kreger. Handout #13 www.bpdresourcecenter.org Borderline Personality Disorder Resource Center (run by New York Presbyterian, the University Hospital of Columbia and Cornell). CLASS THREE Handout #14 Integrated Dual Disorders Treatment: Adolescents with Co-occurring Brain & Substance Use Disorders

Adolescents are often referred to treatment for substance abuse, but are not referred to a qualified mental health professional for appropriate diagnosis and treatment of any underlying cause for their drug and alcohol abuse. However, many teens have symptoms of a mood disorder that may in fact have led to self- medicating with street drugs and alcohol.

Families and caregivers know how difficult it is to find treatment for an adolescent who abuses drugs or alcohol, but who also is diagnosed with a brain disorder (mental illness); i.e., ADHD, depression, or bipolar disorder. Traditionally, programs that treat individuals with brain disorders do not treat individuals with active substance abuse problems, and programs for substance abusers are not geared for people with mental illness. Adolescents are often caught in this treatment or services gap.

Is dual diagnosis common? The combination of mental illness and substance abuse is so common that many clinicians now expect to find it. Studies show that more than half of young persons with a substance abuse diagnosis also have a diagnosable mental illness.

What causes these disorders? Mental health and addiction counselors increasingly believe that brain disorders and substance abuse disorders are biologically and physiologically based.

What kind of treatment works? Families and caregivers may feel angry and blame the adolescent for being foolish and weak-willed. They may feel hurt when their child breaks trust by lying and stealing. But it's important to realize that mental illness and often substance abuse are disorders that the adolescent cannot take control of without professional help.

Teens with difficult problems such as concurrent mental illness and substance abuse disorders do not respond to simplistic advice like "just say no" or "snap out of it." Psychotherapy and medication combined with appropriate self-help and other support groups help most, but patients are still highly prone to relapse.

Treatment programs designed primarily for substance abusers are not recommended for individuals who have a diagnosed mental illness. Their reliance on confrontation techniques and discouragement of use of appropriate prescription medications tend to compound the problems of individuals with mental illness. These strategies may produce stress levels that make symptoms worse or cause relapse.

What is a better approach? Increasingly, the psychiatric and drug counseling communities agree that both disorders must be treated at the same time. Early studies show that when mental illness and substance abuse are treated together, suicide attempts and psychotic episodes decrease rapidly. Since dually diagnosed clients to not fit well into most traditional 12-step programs, special peer groups based on the principle of treating both disorders together should be developed at the community level. Individuals who develop positive social networking have a much better chance of controlling their illnesses. Healthy recreational activities are extremely important.

What's the first step in treatment? The presence of both disorders must first be established by careful assessment. This may be difficult because the symptoms of one disorder can mimic the symptoms of the other. Seek referral to a psychologist or psychiatrist. Local NAMI affiliates are happy to refer families to mental health professionals their members recommend. (Call the NAMI NH HelpLine at 1-800/242-6264 for a local contact). Once a professional assessment has confirmed a dual diagnosis of mental illness and substance abuse, mental health professionals and family members should work together on a strategy for integrating care and motivating the adolescent.

What do model programs for treating mental illness and substance abuse look like? There is a growing number of model programs. Support groups are an important component of these programs. Adolescents support each other as they learn about the negative role that alcohol and drugs has had on their lives. They learn social skills and how to replace substance use with new thoughts and behaviors. They get help with concrete situations that arise because of their brain disorder (mental illness). Look into programs that have support groups for family members and friends.

If your teen has a substance abuse disorder ...

1. Don't regard it as a family disgrace. Recovery is possible just as it is with other illnesses. 2. Encourage and facilitate participation in support groups during and after treatment. 3. Don't nag, preach, or lecture. 4. Don't use the "if you loved me" approach. It is like saying, "If you loved me, you would not have tuberculosis." 5. Establish consequences for behaviors. Don't be afraid to call upon law enforcement if teens engage in underage drinking on your premises. You can be held legally responsible for endangering minors if you do not take timely action. 6. Avoid threats unless you think them through carefully and definitely intend to carry them out. Idle threats only make the person with a substance abuse disorder feel you don't mean what you say. 7. During recovery, encourage teens to engage in after-school activities with adult supervision. If they cannot participate in sports or other extracurricular school activities, part-time employment or volunteer work can build self-esteem. 8. Don't expect an immediate, 100-percent recovery. Like any illness, there is a period of convalescence with a brain disorder. There may be relapses and times of tension and resentment among family members. 9. Do offer love, support, and understanding during the recovery.

Reviewed by Patrick C. Friman, Ph.D., A.B.P.P., Director of Clinical Services & Research at Father Flanigan's Boys' Home and associate professor, Creighton University School of Medicine. CLASS THREE Handout #15

Your Child and Medication

One in ten of America’s children has an emotional disturbance such as attention deficit hyperactivity disorder, depression or anxiety, that can cause unhappiness for the child and problems at home, at play, at school. Many of these children will be taken by their parents to their family physician or pediatrician, or, in many cases, a specialist in child mental health. The child will be carefully evaluated and may begin some type of therapy. There are many treatment options available. Choosing the right treatment for your child is very important. Each child is different. At times, psychotherapies, behavioral strategies, and family support may be very effective. In some cases, medications are needed to help the child become more able to cope with everyday activities.

If you are planning to have a doctor see your child, you should share a record of any of your child’s medical problems, any other medications your child is taking, including over-the-counter medications or vitamin and herbal supplements, and any allergic reactions your child has suffered. If a medication is prescribed for your child, there are certain questions you should ask. It will be helpful to take notes as it is easy to forget exactly what the doctor says.

 What is the name of the medication and how will it help my child?  How well established and accepted is the use of this medication in children or adolescents?  Is the medicine available in both brand-name and generic versions, and is it all right to use the less expensive (generic) medication? What is the name of the generic version? Is it all right to switch among brands, or between brand-name and generic forms?  What is the proper dosage for my child? Is the dose likely to change as he or she grows?  What is my child has a problem with the pill or capsule? Is it available in a chewable tablet or liquid form?  How many times a day must the medicine b given? Should it be taken with meals, or on an empty stomach? Should the school give the medication and, if so, whom?  How long must my child take this medication? If it is discontinued, should it be done all at once or slowly?  Will my child be monitored while on this medication and, if so, by whom?  Should my child have any laboratory tests before taking this medication? Will it be necessary to have blood levels checked or have other laboratory tests during the time my child is taking this medication?  Are there possible side effects? If I notice a side effect – such as unusual sleepiness, agitation, fatigue, hand tremors – should I notify the doctor at once?  What if my child misses a dose? Spits it up?

You may think of other questions. Don’t be afraid to ask. When you have the prescription filled, be sure the pharmacist gives you a flyer describing the medication, how it should be taken, and any possible side effects it may have. The label on the medication will have lots of information. Read the label carefully before giving the medication to your child. The label will give the name of the pharmacy, its telephone number, the name of the medication, the dosage, and when it should be taken. It will also tell you how many times the medication can be refilled.

If you want to learn more about your child’s medication, you will find helpful books at your public library, or the reference librarian can show you how to look up the medication in the Physicians’ Desk Reference (PDR). While a great deal of information about mental disorders and their treatment in children is available on the internet, care is required to distinguish fact from opinion.

What Does “Off-Label” Mean?

Based on clinical experience and medication knowledge, a physician may prescribe to young children a medication that has been approved by the U.S. Food and Drug Administration (FDA) for use in adults or older children. This use of the medication is called “off-label”. Many medications prescribed for child mental disorders, including some of the newer medications that are proving helpful, are prescribed off- label because they have not been systematically studied for safety and efficacy in children. Medications that have not undergone testing are dispensed with the statement that “safety and efficacy have not been established in pediatric patients”. The FDA has been urging that products be appropriately studied in children and has offered incentives to drug manufacturers to carry out such testing. The National Institutes of Health (NIH) and the FDA are examining the issue of medication in children and are developing new research approaches.

Help Your Child Take Medication Safely

 Be sure the doctor knows all medications – including over-the-counter medications and herbal and vitamin supplements – that your child takes.  Read the label before opening the bottle. Make sure you are giving the proper dosage. If the medication is liquid, use a special measure – a cup, a teaspoon, a medicine dropper, or a syringe. Often a measure comes with the medicine. If not, ask your pharmacist which measure is most suitable to use with the medication your child is taking.  Always use child-resistant caps and store all medications in a safe place.  Never decide to increase or decrease the dosage or stop the medication without consulting the doctor.  Don’t give medication prescribed for one child to another child, even if it appears to be the same problem.  Keep a chart and mark it each time the child takes the medication. It is easy to forget.

Resources A Guide to Children’s Medication. American Academy of Pediatrics. Website: http://www.aap.org/family/medications.htm

Facts for Families, a series of fact sheets that include information on medications for children, health insurance, how to seek help, etc. American Academy of Child and Adolescent Psychiatry. Website: http://www.aacap.org/publications/factsfam/index.htm

How to Give Medicine to Children. Food and Drug Administration. Website: http://www.fda.gov/fdac/features/196_kid.html

For More Information About NIMH Office of Communications and Public Liaison. Phone: (301) 443-4513. Website: http://www.nimh.nih.gov