Autism Spectrum Disorder

What is autism spectrum disorder (ASD)?

Autism is a group of developmental brain disorders, collectively called autism spectrum disorder (ASD). The term "spectrum" refers to the wide range of symptoms, skills, and levels of impairment, or disability, that children with ASD can have. Some children are mildly impaired by their symptoms, but others are severely disabled.

ASD is diagnosed according to guidelines listed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition - Text Revision (DSM-IV-TR).1 The manual currently defines five disorders, sometimes called pervasive developmental disorders (PDDs), as ASD:

  • Autistic disorder (classic autism)
  • Asperger's disorder (Asperger syndrome)
  • Pervasive developmental disorder not otherwise specified (PDD-NOS)
  • Rett's disorder (Rett syndrome)
  • Childhood disintegrative disorder (CDD).

This information packet will focus on autism, Asperger syndrome, and PDD-NOS, with brief descriptions of Rett syndrome and CDD in the section, "Related disorders."

What are the symptoms of ASD?

Symptoms of autism spectrum disorder (ASD) vary from one child to the next, but in general, they fall into three areas:

  • Social impairment
  • Communication difficulties
  • Repetitive and stereotyped behaviors

Children with ASD do not follow typical patterns when developing social and communication skills. Parents are usually the first to notice unusual behaviors in their child. Often, certain behaviors become more noticeable when comparing children of the same age.

In some cases, babies with ASD may seem different very early in their development. Even before their first birthday, some babies become overly focused on certain objects, rarely make eye contact, and fail to engage in typical back-and-forth play and babbling with their parents. Other children may develop normally until the second or even third year of life, but then start to lose interest in others and become silent, withdrawn, or indifferent to social signals. Loss or reversal of normal development is called regression and occurs in some children with ASD.2

Social impairment

Most children with ASD have trouble engaging in everyday social interactions. According to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition - Text Revision, some children with ASD may:

  • Make little eye contact
  • Tend to look and listen less to people in their environment or fail to respond to other people
  • Do not readily seek to share their enjoyment of toys or activities by pointing or showing things to others
  • Respond unusually when others show anger, distress, or affection.

Recent research suggests that children with ASD do not respond to emotional cues in human social interactions because they may not pay attention to the social cues that others typically notice. For example, one study found that children with ASD focus on the mouth of the person speaking to them instead of on the eyes, which is where children with typical development tend to focus.3 A related study showed that children with ASD appear to be drawn to repetitive movements linked to a sound, such as hand-clapping during a game of pat-a-cake.4 More research is needed to confirm these findings, but such studies suggest that children with ASD may misread or not notice subtle social cues - a smile, a wink, or a grimace - that could help them understand social relationships and interactions. For these children, a question such as, "Can you wait a minute?" always means the same thing, whether the speaker is joking, asking a real question, or issuing a firm request. Without the ability to interpret another person's tone of voice as well as gestures, facial expressions, and other nonverbal communications, children with ASD may not properly respond.

Likewise, it can be hard for others to understand the body language of children with ASD. Their facial expressions, movements, and gestures are often vague or do not match what they are saying. Their tone of voice may not reflect their actual feelings either. Many older children with ASD speak with an unusual tone of voice and may sound sing-song or flat and robotlike.1

Children with ASD also may have trouble understanding another person's point of view. For example, by school age, most children understand that other people have different information, feelings, and goals than they have. Children with ASD may lack this understanding, leaving them unable to predict or understand other people's actions.

Communication issues

According to the American Academy of Pediatrics' developmental milestones, by the first birthday, typical toddlers can say one or two words, turn when they hear their name, and point when they want a toy. When offered something they do not want, toddlers make it clear with words, gestures, or facial expressions that the answer is "no."

For children with ASD, reaching such milestones may not be so straightforward. For example, some children with autism may:

  • Fail or be slow to respond to their name or other verbal attempts to gain their attention
  • Fail or be slow to develop gestures, such as pointing and showing things to others
  • Coo and babble in the first year of life, but then stop doing so
  • Develop language at a delayed pace
  • Learn to communicate using pictures or their own sign language
  • Speak only in single words or repeat certain phrases over and over, seeming unable to combine words into meaningful sentences
  • Repeat words or phrases that they hear, a condition called echolalia
  • Use words that seem odd, out of place, or have a special meaning known only to those familiar with the child's way of communicating.

Even children with ASD who have relatively good language skills often have difficulties with the back and forth of conversations. For example, because they find it difficult to understand and react to social cues, children with Asperger syndrome often talk at length about a favorite subject, but they won't allow anyone else a chance to respond or notice when others react indifferently.1

Children with ASD who have not yet developed meaningful gestures or language may simply scream or grab or otherwise act out until they are taught better ways to express their needs. As these children grow up, they can become aware of their difficulty in understanding others and in being understood. This awareness may cause them to become anxious or depressed. For more information on mental health issues in children with ASD, see the section: What are some other conditions that children with ASD may have?

Repetitive and stereotyped behaviors

Children with ASD often have repetitive motions or unusual behaviors. These behaviors may be extreme and very noticeable, or they can be mild and discreet. For example, some children may repeatedly flap their arms or walk in specific patterns, while others may subtly move their fingers by their eyes in what looks to be a gesture. These repetitive actions are sometimes called "stereotypy" or "stereotyped behaviors."

Children with ASD also tend to have overly focused interests. Children with ASD may become fascinated with moving objects or parts of objects, like the wheels on a moving car. They might spend a long time lining up toys in a certain way, rather than playing with them. They may also become very upset if someone accidentally moves one of the toys. Repetitive behavior can also take the form of a persistent, intense preoccupation.1 For example, they might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Children with ASD often have great interest in numbers, symbols, or science topics.

While children with ASD often do best with routine in their daily activities and surroundings, inflexibility may often be extreme and cause serious difficulties. They may insist on eating the same exact meals every day or taking the same exact route to school. A slight change in a specific routine can be extremely upsetting.1 Some children may even have emotional outbursts, especially when feeling angry or frustrated or when placed in a new or stimulating environment.

No two children express exactly the same types and severity of symptoms. In fact, many typically developing children occasionally display some of the behaviors common to children with ASD. However, if you notice your child has several ASD-related symptoms, have your child screened and evaluated by a health professional experienced with ASD.

Related Disorders

Rett syndrome and childhood disintegrative disorder (CDD) are two very rare forms of ASD that include a regression in development. Only 1 of every 10,000 to 22,000 girls has Rett syndrome.5,6 Even rarer, only 1 or 2 out of 100,000 children with ASD have CDD.7

Unlike other forms of ASD, Rett syndrome mostly affects girls. In general, children with Rett syndrome develop normally for 6-18 months before regression and autism-like symptoms begin to appear. Children with Rett syndrome may also have difficulties with coordination, movement, and speech. Physical, occupational, and speech therapy can help, but no specific treatment for Rett syndrome is available yet.

With funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, scientists have discovered that a mutation in the sequence of a single gene is linked to most cases of Rett syndrome.8 This discovery may help scientists find ways to slow or stop the progress of the disorder. It may also improve doctors' ability to diagnose and treat children with Rett syndrome earlier, improving their overall quality of life.

CDD affects very few children, which makes it hard for researchers to learn about the disease. Symptoms of CDD may appear by age 2, but the average age of onset is between age 3 and 4. Until this time, children with CDD usually have age-appropriate communication and social skills. The long period of normal development before regression helps to set CDD apart from Rett syndrome. CDD may affect boys more often than girls.9

Children with CDD experience severe, wide-ranging and obvious loss of previously-obtained motor, language, and social skills.10 The loss of such skills as vocabulary is more dramatic in CDD than in classic autism.11 Other symptoms of CDD include loss of bowel and bladder control.1

How is ASD diagnosed?

ASD diagnosis is often a two-stage process. The first stage involves general developmental screening during well-child checkups with a pediatrician or an early childhood health care provider. Children who show some developmental problems are referred for additional evaluation. The second stage involves a thorough evaluation by a team of doctors and other health professionals with a wide range of specialities.12 At this stage, a child may be diagnosed as having autism or another developmental disorder.

Children with autism spectrum disorder (ASD) can usually be reliably diagnosed by age 2, though research suggests that some screening tests can be helpful at 18 months or even younger.12,13

Many people - including pediatricians, family doctors, teachers, and parents - may minimize signs of ASD at first, believing that children will "catch up" with their peers. While you may be concerned about labeling your young child with ASD, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe disabilities associated with ASD. Early intervention may also improve your child's IQ, language, and everyday functional skills, also called adaptive behavior.14

Screening

A well-child checkup should include a developmental screening test, with specific ASD screening at 18 and 24 months as recommended by the American Academy of Pediatrics.14 Screening for ASD is not the same as diagnosing ASD. Screening instruments are used as a first step to tell the doctor whether a child needs more testing. If your child's pediatrician does not routinely screen your child for ASD, ask that it be done.

For parents, your own experiences and concerns about your child's development will be very important in the screening process. Keep your own notes about your child's development and look through family videos, photos, and baby albums to help you remember when you first noticed each behavior and when your child reached certain developmental milestones.

Types of ASD screening instruments

Sometimes the doctor will ask parents questions about the child's symptoms to screen for ASD. Other screening instruments combine information from parents with the doctor's own observations of the child. Examples of screening instruments for toddlers and preschoolers include:

  • Checklist of Autism in Toddlers (CHAT)
  • Modified Checklist for Autism in Toddlers (M-CHAT)
  • Screening Tool for Autism in Two-Year-Olds (STAT)
  • Social Communication Questionnaire (SCQ)
  • Communication and Symbolic Behavior Scales (CSBS).

To screen for mild ASD or Asperger syndrome in older children, the doctor may rely on different screening instruments, such as:

  • Autism Spectrum Screening Questionnaire (ASSQ)
  • Australian Scale for Asperger's Syndrome (ASAS)
  • Childhood Asperger Syndrome Test (CAST).

Some helpful resources on ASD screening include the Center for Disease Control and Prevention's General Developmental Screening tools and ASD Specific Screening tools on their website.

Comprehensive diagnostic evaluation

The second stage of diagnosis must be thorough in order to find whether other conditions may be causing your child's symptoms. For more information, see the section: What are some other conditions that children with ASD may have?

A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing ASD may do this evaluation. The evaluation may assess the child's cognitive level (thinking skills), language level, and adaptive behavior (age-appropriate skills needed to complete daily activities independently, for example eating, dressing, and toileting).

Because ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include brain imaging and gene tests, along with in-depth memory, problem-solving, and language testing.12 Children with any delayed development should also get a hearing test and be screened for lead poisoning as part of the comprehensive evaluation.

Although children can lose their hearing along with developing ASD, common ASD symptoms (such as not turning to face a person calling their name) can also make it seem that children cannot hear when in fact they can. If a child is not responding to speech, especially to his or her name, it's important for the doctor to test whether a child has hearing loss.

The evaluation process is a good time for parents and caregivers to ask questions and get advice from the whole evaluation team. The outcome of the evaluation will help plan for treatment and interventions to help your child. Be sure to ask who you can contact with follow-up questions.

What are some other conditions that children with ASD may have?

Sensory problems

Many children with autism spectrum disorder (ASD) either overreact or underreact to certain sights, sounds, smells, textures, and tastes. For example, some may:

  • Dislike or show discomfort from a light touch or the feel of clothes on their skin
  • Experience pain from certain sounds, like a vacuum cleaner, a ringing telephone, or a sudden storm; sometimes they will cover their ears and scream
  • Have no reaction to intense cold or pain.

Researchers are trying to determine if these unusual reactions are related to differences in integrating multiple types of information from the senses.

Sleep problems

Children with ASD tend to have problems falling asleep or staying asleep, or have other sleep problems.15 These problems make it harder for them to pay attention, reduce their ability to function, and lead to poor behavior. In addition, parents of children with ASD and sleep problems tend to report greater family stress and poorer overall health among themselves.

Fortunately, sleep problems can often be treated with changes in behavior, such as following a sleep schedule or creating a bedtime routine. Some children may sleep better using medications such as melatonin, which is a hormone that helps regulate the body's sleep-wake cycle. Like any medication, melatonin can have unwanted side effects. Talk to your child's doctor about possible risks and benefits before giving your child melatonin. Treating sleep problems in children with ASD may improve the child's overall behavior and functioning, as well as relieve family stress.16

Intellectual disability

Many children with ASD have some degree of intellectual disability. When tested, some areas of ability may be normal, while others - especially cognitive (thinking) and language abilities - may be relatively weak. For example, a child with ASD may do well on tasks related to sight (such as putting a puzzle together) but may not do as well on language-based problem-solving tasks. Children with a form of ASD like Asperger syndrome often have average or above-average language skills and do not show delays in cognitive ability or speech.

Seizures

One in four children with ASD has seizures, often starting either in early childhood or during the teen years.17 Seizures, caused by abnormal electrical activity in the brain, can result in

  • A short-term loss of consciousness, or a blackout
  • Convulsions, which are uncontrollable shaking of the whole body, or unusual movements
  • Staring spells.

Sometimes lack of sleep or a high fever can trigger a seizure. An electroencephalogram (EEG), a nonsurgical test that records electrical activity in the brain, can help confirm whether a child is having seizures. However, some children with ASD have abnormal EEGs even if they are not having seizures.

Seizures can be treated with medicines called anticonvulsants. Some seizure medicines affect behavior; changes in behavior should be closely watched in children with ASD. In most cases, a doctor will use the lowest dose of medicine that works for the child. Anticonvulsants usually reduce the number of seizures but may not prevent all of them.

For more information about medications, see the NIMH online booklet, "Medications". None of these medications have been approved by the FDA to specifically treat symptoms of ASD.

Fragile X syndrome

Fragile X syndrome is a genetic disorder and is the most common form of inherited intellectual disability,18 causing symptoms similar to ASD. The name refers to one part of the X chromosome that has a defective piece that appears pinched and fragile when viewed with a microscope. Fragile X syndrome results from a change, called a mutation, on a single gene. This mutation, in effect, turns off the gene. Some people may have only a small mutation and not show any symptoms, while others have a larger mutation and more severe symptoms.19

Around 1 in 3 children who have Fragile X syndrome also meet the diagnostic criteria for ASD, and about 1 in 25 children diagnosed with ASD have the mutation that causes Fragile X syndrome.19

Because this disorder is inherited, children with ASD should be checked for Fragile X, especially if the parents want to have more children. Other family members who are planning to have children may also want to be checked for Fragile X syndrome. For more information on Fragile X, see the Eunice Kennedy Shriver National Institute of Child Health and Human Development website.

Tuberous sclerosis

Tuberous sclerosis is a rare genetic disorder that causes noncancerous tumors to grow in the brain and other vital organs. Tuberous sclerosis occurs in 1 to 4 percent of people with ASD.18,20 A genetic mutation causes the disorder, which has also been linked to mental retardation, epilepsy, and many other physical and mental health problems. There is no cure for tuberous sclerosis, but many symptoms can be treated.

Gastrointestinal problems

Some parents of children with ASD report that their child has frequent gastrointestinal (GI) or digestion problems, including stomach pain, diarrhea, constipation, acid reflux, vomiting, or bloating. Food allergies may also cause problems for children with ASD.21 It's unclear whether children with ASD are more likely to have GI problems than typically developing children.22,23 If your child has GI problems, a doctor who specializes in GI problems, called a gastroenterologist, can help find the cause and suggest appropriate treatment.

Some studies have reported that children with ASD seem to have more GI symptoms, but these findings may not apply to all children with ASD. For example, a recent study found that children with ASD in Minnesota were more likely to have physical and behavioral difficulties related to diet (for example, lactose intolerance or insisting on certain foods), as well as constipation, than children without ASD.23 The researchers suggested that children with ASD may not have underlying GI problems, but that their behavior may create GI symptoms - for example, a child who insists on eating only certain foods may not get enough fiber or fluids in his or her diet, which leads to constipation.

Some parents may try to put their child on a special diet to control ASD or GI symptoms. While some children may benefit from limiting certain foods, there is no strong evidence that these special diets reduce ASD symptoms.24 If you want to try a special diet, first talk with a doctor or a nutrition expert to make sure your child's nutritional needs are being met.

Co-occurring mental disorders

Children with ASD can also develop mental disorders such as anxiety disorders, attention deficit hyperactivity disorder (ADHD), or depression. Research shows that people with ASD are at higher risk for some mental disorders than people without ASD.25 Managing these co-occurring conditions with medications or behavioral therapy, which teaches children how to control their behavior, can reduce symptoms that appear to worsen a child's ASD symptoms. Controlling these conditions will allow children with ASD to focus more on managing the ASD.26

How is ASD treated?

While there's no proven cure yet for autism spectrum disorder (ASD), treating ASD early, using school-based programs, and getting proper medical care can greatly reduce ASD symptoms and increase your child's ability to grow and learn new skills.

Early Intervention

Research has shown that intensive behavioral therapy during the toddler or preschool years can significantly improve cognitive and language skills in young children with ASD.27,28 There is no single best treatment for all children with ASD, but the American Academy of Pediatrics recently noted common features of effective early intervention programs.29 These include:

  • Starting as soon as a child has been diagnosed with ASD
  • Providing focused and challenging learning activities at the proper developmental level for the child for at least 25 hours per week and 12 months per year
  • Having small classes to allow each child to have one-on-one time with the therapist or teacher and small group learning activities
  • Having special training for parents and family
  • Encouraging activities that include typically developing children, as long as such activities help meet a specific learning goal
  • Measuring and recording each child's progress and adjusting the intervention program as needed
  • Providing a high degree of structure, routine, and visual cues, such as posted activity schedules and clearly defined boundaries, to reduce distractions
  • Guiding the child in adapting learned skills to new situations and settings and maintaining learned skills
  • Using a curriculum that focuses on
    • Language and communication
    • Social skills, such as joint attention (looking at other people to draw attention to something interesting and share in experiencing it)
    • Self-help and daily living skills, such as dressing and grooming
    • Research-based methods to reduce challenging behaviors, such as aggression and tantrums
    • Cognitive skills, such as pretend play or seeing someone else's point of view
    • Typical school-readiness skills, such as letter recognition and counting.

One type of a widely accepted treatment is applied behavior analysis (ABA). The goals of ABA are to shape and reinforce new behaviors, such as learning to speak and play, and reduce undesirable ones. ABA, which can involve intensive, one-on-one child-teacher interaction for up to 40 hours a week, has inspired the development of other, similar interventions that aim to help those with ASD reach their full potential.30,31 ABA-based interventions include:

  • Verbal Behavior - focuses on teaching language using a sequenced curriculum that guides children from simple verbal behaviors (echoing) to more functional communication skills through techniques such as errorless teaching and
  • Pivotal Response Training - aims at identifying pivotal skills, such as initiation and self-management, that affect a broad range of behavioral responses. This intervention incorporates parent and family education aimed at providing skills that enable the child to function in inclusive settings.33,34

Other types of early interventions include:

  • Developmental, Individual Difference, Relationship-based(DIR)/Floortime Model - aims to build healthy and meaningful relationships and abilities by following the natural emotions and interests of the child.35 One particular example is the Early Start Denver Model, which fosters improvements in communication, thinking, language, and other social skills and seeks to reduce atypical behaviors. Using developmental and relationship-based approaches, this therapy can be delivered in natural settings such as the home or pre-school.33,34
  • TEACCH (Treatment and Education of Autistic and related Communication handicapped Children) - emphasizes adapting the child's physical environment and using visual cues (for example, having classroom materials clearly marked and located so that students can access them independently). Using individualized plans for each student, TEACCH builds on the child's strengths and emerging skills.34,36
  • Interpersonal Synchrony - targets social development and imitation skills, and focuses on teaching children how to establish and maintain engagement with others.

For children younger than age 3, these interventions usually take place at home or in a child care center. Because parents are a child's earliest teachers, more programs are beginning to train parents to continue the therapy at home.

Students with ASD may benefit from some type of social skills training program.37 While these programs need more research, they generally seek to increase and improve skills necessary for creating positive social interactions and avoiding negative responses. For example, Children's Friendship Training focuses on improving children's conversation and interaction skills and teaches them how to make friends, be a good sport, and respond appropriately to teasing.38

Working with your child's school

Start by speaking with your child's teacher, school counselor, or the school's student support team to begin an evaluation. Each state has a Parent Training and Information Center and a Protection and Advocacy Agency that can help you get an evaluation. A team of professionals conducts the evaluation using a variety of tools and measures. The evaluation will look at all areas related to your child's abilities and needs.

Once your child has been evaluated, he or she has several options, depending on the specific needs. If your child needs special education services and is eligible under the Individuals with Disabilities Education Act (IDEA), the school district (or the government agency administering the program) must develop an individualized education plan, or IEP specifically for your child within 30 days.

IDEA provides free screenings and early intervention services to children from birth to age 3. IDEA also provides special education and related services from ages 3 to 21. Information is available from the U.S. Department of Education.

If your child is not eligible for special education services - not all children with ASD are eligible - he or she can still get free public education suited to his or her needs, which is available to all public-school children with disabilities under Section 504 of the Rehabilitation Act of 1973, regardless of the type or severity of the disability.

The U.S. Department of Education's Office for Civil Rights enforces Section 504 in programs and activities that receive Federal education funds. More information on Section 504 is available on the Department of Education website.

More information about U.S. Department of Education programs for children with disabilities is available on their website.

During middle and high school years, your child's teachers will begin to discuss practical issues such as work, living away from a parent or caregiver's home, and hobbies. These lessons should include gaining work experience, using public transportation, and learning skills that will be important in community living.29

Medications

Some medications can help reduce symptoms that cause problems for your child in school or at home. Many other medications may be prescribed off-label, meaning they have not been approved by the U.S. Food and Drug Administration (FDA) for a certain use or for certain people. Doctors may prescribe medications off-label if they have been approved to treat other disorders that have similar symptoms to ASD, or if they have been effective in treating adults or older children with ASD. Doctors prescribe medications off-label to try to help the youngest patients, but more research is needed to be sure that these medicines are safe and effective for children and teens with ASD.

At this time, the only medications approved by the FDA to treat aspects of ASD are the antipsychotics risperidone (Risperdal) and aripripazole (Abilify). These medications can help reduce irritability—meaning aggression, self-harming acts, or temper tantrums—in children ages 5 to 16 who have ASD.

Some medications that may be prescribed off-label for children with ASD include the following:

Antipsychotic medications are more commonly used to treat serious mental illnesses such as schizophrenia. These medicines may help reduce aggression and other serious behavioral problems in children, including children with ASD. They may also help reduce repetitive behaviors, hyperactivity, and attention problems.29

Antidepressant medications, such as fluoxetine (Prozac) or sertraline (Zoloft), are usually prescribed to treat depression and anxiety but are sometimes prescribed to reduce repetitive behaviors. Some antidepressants may also help control aggression and anxiety in children with ASD.29 However, researchers still are not sure if these medications are useful; a recent study suggested that the antidepressant citalopram (Celexa) was no more effective than a placebo (sugar pill) at reducing repetitive behaviors in children with ASD.39

Stimulant medications, such as methylphenidate (Ritalin), are safe and effective in treating people with attention deficit hyperactivity disorder (ADHD). Methylphenidate has been shown to effectively treat hyperactivity in children with ASD as well. But not as many children with ASD respond to treatment, and those who do have shown more side effects than children with ADHD and not ASD.40

All medications carry a risk of side effects. For details on the side effects of common psychiatric medications, see the NIMH website on "Medications".

FDA warning about antidepressants

Antidepressants are safe and popular, but some studies have suggested that they may have unintended effects on some people, especially in teens and young adults. The FDA warning says that patients of all ages taking antidepressants should be watched closely, especially during the first few weeks of treatment. Possible side effects to look for are depression that gets worse, suicidal thinking or behavior, or any unusual changes in behavior such as trouble sleeping, agitation, or withdrawal from normal social situations. Families and caregivers should report any changes to the doctor. The latest information is available on the FDA website.

A child with ASD may not respond in the same way to medications as typically developing children. You should work with a doctor who has experience treating children with ASD. The doctor will usually start your child on the lowest dose that helps control problem symptoms. Ask the doctor about any side effects of the medication and keep a record of how your child reacts to the medication. The doctor should regularly check your child's response to the treatment.

You have many options for treating your child's ASD. However, not all of them have been proven to work through scientific studies. Read the patient information that comes with your child's medication. Some people keep these patient inserts along with their other notes for easy reference. This is most useful when dealing with several different prescription medications. You should get all the facts about possible risks and benefits and talk to more than one expert when possible before trying a new treatment on your child.

How common is ASD?

Studies measuring autism spectrum disorder (ASD) prevalence—the number of children affected by ASD over a given time period—have reported varying results, depending on when and where the studies were conducted and how the studies defined ASD.

In a 2009 government survey on ASD prevalence, the Centers for Disease Control and Prevention (CDC) found that the rate of ASD was higher than in past U.S. studies. Based on health and school records of 8-year-olds in 14 communities throughout the country, the CDC survey found that around 1 in 110 children has ASD.41 Boys face about four to five times higher risk than girls.

Experts disagree about whether this shows a true increase in ASD prevalence. Since the earlier studies were completed, guidelines for diagnosis have changed. Also, many more parents and doctors now know about ASD, so parents are more likely to take their children to be diagnosed, and more doctors are able to properly diagnose ASD. These and other changes may help explain some differences in prevalence numbers. Even so, the CDC report confirms other recent studies showing that more children are being diagnosed with ASD than ever before. For more information, please visit the autism section of the CDC website.

What causes ASD?

Scientists don't know the exact causes of autism spectrum disorder (ASD), but research suggests that both genes and environment play important roles.

Genetic factors

In identical twins who share the exact same genetic code, if one has ASD, the other twin also has ASD in nearly 9 out of 10 cases. If one sibling has ASD, the other siblings have 35 times the normal risk of also developing the disorder. Researchers are starting to identify particular genes that may increase the risk for ASD.42,43

Still, scientists have only had some success in finding exactly which genes are involved. For more information about such cases, see the section, "What are some other conditions that children with ASD may also have?" which describes Fragile X syndrome and tuberous sclerosis.

Most people who develop ASD have no reported family history of autism, suggesting that random, rare, and possibly many gene mutations are likely to affect a person's risk.44,45 Any change to normal genetic information is called a mutation. Mutations can be inherited, but some arise for no reason. Mutations can be helpful, harmful, or have no effect.

Having increased genetic risk does not mean a child will definitely develop ASD. Many researchers are focusing on how various genes interact with each other and environmental factors to better understand how they increase the risk of this disorder.

Environmental factors

In medicine, "environment" refers to anything outside of the body that can affect health. This includes the air we breathe, the water we drink and bathe in, the food we eat, the medicines we take, and many other things that our bodies may come in contact with. Environment also includes our surroundings in the womb, when our mother's health directly affects our growth and earliest development.

Researchers are studying many environmental factors such as family medical conditions, parental age and other demographic factors, exposure to toxins, and complications during birth or pregnancy.29,46-48

As with genes, it's likely that more than one environmental factor is involved in increasing risk for ASD. And, like genes, any one of these risk factors raises the risk by only a small amount. Most people who have been exposed to environmental risk factors do not develop ASD. The National Institute of Environmental Health Sciences is also conducting research in this area. More information is available on their website.

Scientists are studying how certain environmental factors may affect certain genes—turning them on or off, or increasing or decreasing their normal activity. This process is called epigenetics and is providing researchers with many new ways to study how disorders like ASD develop and possibly change over time.

ASD and vaccines

Health experts recommend that children receive a number of vaccines early in life to protect against dangerous, infectious diseases, such as measles. Since pediatricians in the United States started giving these vaccines during regular checkups, the number of children getting sick, becoming disabled, or dying from these diseases has dropped to almost zero.

Children in the United States receive several vaccines during their first 2 years of life, around the same age that ASD symptoms often appear or become noticeable. A minority of parents suspect that vaccines are somehow related to their child's disorder. Some may be concerned about these vaccines due to the unproven theory that ASD may be caused by thimerosal. Thimerosal is a mercury-based chemical once added to some, but not all, vaccines to help extend their shelf life. However, except for some flu vaccines, no vaccine routinely given to preschool aged children in the United States has contained thimerosal since 2001. Despite this change, the rate of children diagnosed with ASD has continued to rise.

Other parents believe their child's illness might be linked to vaccines designed to protect against more than one disease, such as the measles-mumps-rubella (MMR) vaccine, which never contained thimerosal.

Many studies have been conducted to try to determine if vaccines are a possible cause of autism. As of 2010, none of the studies has linked autism and vaccines.49,50

Following extensive hearings, a special court of Federal judges ruled against several test cases that tried to prove that vaccines containing thimerosal, either by themselves or combined with the MMR vaccine, caused autism. More information about these hearings is available on the U.S. Court of Federal Claims' website.

The latest information about research on autism and vaccines is available from the Centers for Disease Control and Prevention. This website provides information from the Federal Government and independent organizations.

What efforts are under way to improve the detection and treatment of ASD?

Many recent research studies have focused on finding the earliest signs of autism spectrum disorder (ASD). These studies aim to help doctors diagnose children at a younger age so they can get needed interventions as quickly as possible.

For example, one early sign of ASD may be increased head size or rapid head growth. Brain imaging studies have shown that abnormal brain development beginning in an infant's first months may have a role in ASD. This theory suggests that genetic defects in growth factors, which direct proper brain development, cause the brain abnormalities seen in autism. It's possible that an infant's sudden, rapid head growth may be an early warning signal, which could help in early diagnosis and treatment or possible prevention of ASD.51

Current studies on ASD treatment are exploring many approaches, such as:

  • A computer-based training program designed to teach children with ASD how to create and respond to facial expressions appropriately52
  • A medication that may help improve functioning in children with Fragile X syndrome53
  • New social interventions that can be used in the classroom or other "everyday" settings
  • An intervention parents can follow to reduce and prevent ASD-related disability in children at high risk for the disorder.54
  • More information about clinical trials on ASD funded by the National Institute of Mental Health is available on the website.

How can I help a child who has ASD?

After your child is diagnosed with autism spectrum disorder (ASD), you may feel unprepared or unable to provide your child with the necessary care and education. Know that there are many treatment options, social services and programs, and other resources that can help.

Some tips that can help you and your child are:

  • Keep a record of conversations, meetings with health care providers and teachers, and other sources of information. This will help you remember the different treatment options and decide which would help your child most.
  • Keep a record of the doctors' reports and your child's evaluation. This information may help your child qualify for special programs.
  • Contact your local health department or autism advocacy groups to learn about the special programs available in your state and local community.
  • Talk with your child's pediatrician, school system, or an autism support group to find an autism expert in your area who can help you develop an intervention plan and find other local resources.

Understanding teens with ASD

The teen years can be a time of stress and confusion for any growing child, including teenagers with autism spectrum disorder (ASD).

During the teenage years, adolescents become more aware of other people and their relationships with them. While most teenagers are concerned with acne, popularity, grades, and dates, teens with ASD may become painfully aware that they are different from their peers. For some, this awareness may encourage them to learn new behaviors and try to improve their social skills. For others, hurt feelings and problems connecting with others may lead to depression, anxiety, or other mental disorders. One way that some teens with ASD may express the tension and confusion that can occur during adolescence is through increased autistic or aggressive behavior. Teens with ASD will also need support to help them understand the physical changes and sexual maturation they experience during adolescence.

If your teen seems to have trouble coping, talk with his or her doctor about possible co-occurring mental disorders and what you can do. Behavioral therapies and medications often help.

Preparing for your child's transition to adulthood

The public schools' responsibility for providing services ends when a child with ASD reaches the age of 22. At that time, some families may struggle to find jobs to match their adult child's needs. If your family cannot continue caring for an adult child at home, you may need to look for other living arrangements. For more information, see the section, "Living arrangements for adults with ASD."

Long before your child finishes school, you should search for the best programs and facilities for young adults with ASD. If you know other parents of adults with ASD, ask them about the services available in your community. Local support and advocacy groups may be able to help you find programs and services that your child is eligible to receive as an adult.

Another important part of this transition is teaching youth with ASD to self-advocate. This means that they start to take on more responsibility for their education, employment, health care, and living arrangements. Adults with ASD or other disabilities must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education, in the community, and elsewhere.

Living arrangements for adults with ASD

There are many options for adults living with ASD. Helping your adult child choose the right one will largely depend on what is available in your state and local community, as well as your child's skills and symptoms. Below are some examples of living arrangements you may want to consider:

Independent living. Some adults with ASD are able to live on their own. Others can live in their own home or apartment if they get help dealing with major issues, such as managing personal finances, obtaining necessary health care, and interacting with government or social service agencies. Family members, professional agencies, or other types of providers can offer this assistance.
Living at home. Government funds are available for families who choose to have their adult child with ASD live at home. These programs include Supplemental Security Income, Social Security Disability Insurance, and Medicaid waivers. Information about these programs and others is available from the Social Security Administration (SSA). Make an appointment with your local SSA office to find out which programs would be right for your adult child.

Other home alternatives. Some families open their homes to provide long-term care to adults with disabilities who are not related to them. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.
Supervised group living. People with disabilities often live in group homes or apartments staffed by professionals who help with basic needs. These needs often include meal preparation, housekeeping, and personal care. People who are more independent may be able to live in a home or apartment where staff only visit a few times a week. Such residents generally prepare their own meals, go to work, and conduct other daily activities on their own.
Long-term care facilities. This alternative is available for those with ASD who need intensive, constant supervision.

References

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12. Filipek PA, Accardo PJ, Ashwal S, Baranek GT, Cook EH, Jr., Dawson G, Gordon B, Gravel JS, Johnson CP, Kallen RJ, Levy SE, Minshew NJ, Ozonoff S, Prizant BM, Rapin I, Rogers SJ, Stone WL, Teplin SW, Tuchman RF, Volkmar FR. Practice parameter: screening and diagnosis of autism: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Child Neurology Society. Neurology, 2000 Aug 22;55(4):468–79.

13. Landa RJ, Holman KC, Garrett-Mayer E. Social and communication development in toddlers with early and later diagnosis of autism spectrum disorders. Archives of General Psychiatry, 2007 Jul;64(7):853–64.

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18. Zafeiriou DI, Ververi A, Vargiami E. Childhood autism and associated comorbidities. Brain and Development, 2007 Jun;29(5):257–72.

19. Eunice Kennedy Shriver National Institute of Child Health and Human Development, NIH, PHS, DHHS Families and Fragile X Syndrome. Washington, DC: U.S. Government Printing Office, NIH-96-3402, 2003.

20. Smalley SL. Autism and tuberous sclerosis. Journal of Autism and Developmental Disorders, 1998 Oct;28(5):407–14.

21. Xue M, Brimacombe M, Chaaban J, Zimmerman-Bier B, Wagner GC. Autism spectrum disorders: concurrent clinical disorders. Journal of Child Neurology, 2008 Jan;23(1):6–13.

22. Kuddo T, Nelson KB. How common are gastrointestinal disorders in children with autism? Current Opinion in Pediatrics, 2003 Jun;15(3):339–43.

23. Nikolov RN, Bearss KE, Lettinga J, Erickson C, Rodowski M, Aman MG, McCracken JT, McDougle CJ, Tierney E, Vitiello B, Arnold LE, Shah B, Posey DJ, Ritz L, Scahill L. Gastrointestinal symptoms in a sample of children with pervasive developmental disorders. Journal of Autism and Developmental Disorders, 2009 Mar;39(3):405–13.

24. Buie T, Campbell DB, Fuchs GJ, 3rd, Furuta GT, Levy J, Vandewater J, Whitaker AH, Atkins D, Bauman ML, Beaudet AL, Carr EG, Gershon MD, Hyman SL, Jirapinyo P, Jyonouchi H, Kooros K, Kushak R, Levitt P, Levy SE, Lewis JD, Murray KF, Natowicz MR, Sabra A, Wershil BK, Weston SC, Zeltzer L, Winter H. Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report. Pediatrics, 2010 Jan;125 Suppl 1:S1–18.

25. Leyfer OT, Folstein SE, Bacalman S, Davis NO, Dinh E, Morgan J, Tager-Flusberg H, Lainhart JE. Comorbid psychiatric disorders in children with autism: interview development and rates of disorders. Journal of Autism and Developmental Disorders, 2006 Oct;36(7):849–61.

26. Simonoff E, Pickles A, Charman T, Chandler S, Loucas T, Baird G. Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 2008 Aug;47(8):921–9.

27. Reichow B, Wolery M. Comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the UCLA young autism project model. Journal of Autism and Developmental Disorders, 2009 Jan;39(1):23–41.

28. Rogers SJ, Vismara LA. Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 2008 Jan;37(1):8–38.

29. Myers SM, Johnson CP. Management of children with autism spectrum disorders. Pediatrics, 2007 Nov;120(5):1162–82.

30. McEachin JJ, Smith T, Lovaas OI. Long-term outcome for children with autism who received early intensive behavioral treatment. American Journal of Mental Retardation, 1993 Jan;97(4):359-72; discussion 73–91.

31. Couper JJ, Sampson AJ. Children with autism deserve evidence-based intervention. Medical Journal of Australia, 2003 May 5;178(9):424–5.

32. Levy SE, Mandell DS, Schultz RT. Autism. Lancet, 2009 Nov 7;374(9701):1627–38.

33. Paul R. Interventions to improve communication in autism. Child and Adolescent Psychiatric Clinics of North America, 2008 Oct;17(4):835-56, ix–x.

34. Autism Speaks. How Is Autism Treated? http://www.autismspeaks.org/docs/family_services_docs/100day2/Treatment_Version_2_0.pdf. Accessed on October 22, 2010.

35. The Interdisciplinary Council on Developmental and Learning Disorders. Floortime overview. http://www.icdl.com/dirFloortime/overview/index.shtml. Accessed on Jun 17, 2009.

36. TEACCH – UNC School of Medicine. What is TEACCH? http://teacch.com/about-us-1/what-is-teacch. Accessed on Jun 17, 2009.

37. Bellini S, Peters JK. Social skills training for youth with autism spectrum disorders. Child and Adolescent Psychiatric Clinics of North America, 2008 Oct;17(4):857–73.

38. Frankel F, Myatt R, Sugar C, Whitham C, Gorospe CM, Laugeson E. A Randomized Controlled Study of Parent-assisted Children's Friendship Training with Children having Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 2010 Jul;40(7):827–42.

39. King BH, Hollander E, Sikich L, McCracken JT, Scahill L, Bregman JD, Donnelly CL, Anagnostou E, Dukes K, Sullivan L, Hirtz D, Wagner A, Ritz L. Lack of efficacy of citalopram in children with autism spectrum disorders and high levels of repetitive behavior: citalopram ineffective in children with autism. Archives of General Psychiatry, 2009 Jun;66(6): 583–90.

40. Research Units on Pediatric Psychopharmacology Autism Network. Randomized, controlled, crossover trial of methylphenidate in pervasive developmental disorders with hyperactivity. Archives of General Psychiatry, 2005 Nov;62(11):1266–74.

41. Prevalence of autism spectrum disorders - Autism and Developmental Disabilities Monitoring Network, United States, 2006. MMWR Surveillance Summaries, 2009 Dec 18;58(10):1–20.

42. Campbell DB, Sutcliffe JS, Ebert PJ, Militerni R, Bravaccio C, Trillo S, Elia M, Schneider C, Melmed R, Sacco R, Persico AM, Levitt P. A genetic variant that disrupts MET transcription is associated with autism. Proceedings of the National Academy of Sciences of the United States of America, 2006 Nov 7;103(45):16834–9.

43. Arking DE, Cutler DJ, Brune CW, Teslovich TM, West K, Ikeda M, Rea A, Guy M, Lin S, Cook EH, Chakravarti A. A common genetic variant in the neurexin superfamily member CNTNAP2 increases familial risk of autism. American Journal of Human Genetics, 2008 Jan;82(1):160–4.

44. Sebat J, Lakshmi B, Malhotra D, Troge J, Lese-Martin C, Walsh T, Yamrom B, Yoon S, Krasnitz A, Kendall J, Leotta A, Pai D, Zhang R, Lee YH, Hicks J, Spence SJ, Lee AT, Puura K, Lehtimaki T, Ledbetter D, Gregersen PK, Bregman J, Sutcliffe JS, Jobanputra V, Chung W, Warburton D, King MC, Skuse D, Geschwind DH, Gilliam TC, Ye K, Wigler M. Strong association of de novo copy number mutations with autism. Science, 2007 Apr 20;316(5823):445–9.

45. Morrow EM, Yoo SY, Flavell SW, Kim TK, Lin Y, Hill RS, Mukaddes NM, Balkhy S, Gascon G, Hashmi A, Al-Saad S, Ware J, Joseph RM, Greenblatt R, Gleason D, Ertelt JA, Apse KA, Bodell A, Partlow JN, Barry B, Yao H, Markianos K, Ferland RJ, Greenberg ME, Walsh CA. Identifying autism loci and genes by tracing recent shared ancestry. Science, 2008 Jul 11;321(5886):218–23.

46. Kolevzon A, Gross R, Reichenberg A. Prenatal and perinatal risk factors for autism: a review and integration of findings. Archives of Pediatric and Adolescent Medicine, 2007 Apr;161(4):326–33.

47. Lawler CP, Croen LA, Grether JK, Van de Water J. Identifying environmental contributions to autism: provocative clues and false leads. Mental Retardation and Developmental Disabilities Research Reviews, 2004;10(4):292–302.

48. Daniels JL, Forssen U, Hultman CM, Cnattingius S, Savitz DA, Feychting M, Sparen P. Parental psychiatric disorders associated with autism spectrum disorders in the offspring. Pediatrics, 2008 May;121(5):e1357–62.

49. Immunization Safety Review Committee. Immunization Safety Review: Vaccines and Autism. Washington, DC: The National Academies Press; 2004.

50. Interagency Autism Coordinating Committee. Question 3: what caused this to happen and can this be prevented? The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders Research – January, 19, 2010. Washington, DC: Interagency Autism Coordinating Committee, U.S. Department of Health and Human Services, 2010.

51. Courchesne E, Carper R, Akshoomoff N. Evidence of brain overgrowth in the first year of life in autism. JAMA. 2003 Jul 16;290(3):337–44.

52. National Institute of Mental Health. Recovery act grant aims to teach kids with autism how to better express themselves. http://www.nimh.nih.gov/science-news/2009/recovery-act-grant-aims-to-teach-kids-with-autism-how-to-better-express-themselves.shtml. Accessed on March 23, 2010.

53. National Institute of Mental Health. Clinical tests begin on medication to correct Fragile X defect. http://www.nimh.nih.gov/science-news/2009/clinical-tests-begin-on-medication-to-correct-fragile-x-defect.shtml. Accessed on March 23, 2010.

54. National Institute of Mental Health. NIH awards more than 50 grants to boost search for causes, improve treatments for autism. http://www.nimh.nih.gov/science-news/2009/nih-awards-more-than-50-grants-to-boost-search-for-causes-improve-treatments-for-autism.shtml. Accessed on March 23, 2010.

National Institutes of Health
NIH Publication No. 11-5511
Revised 2011

Page last modified or reviewed by athealth on January 29, 2014

Bipolar Disorder in Children and Teens: A Parent's Guide

Introduction

All parents can relate to the many changes their kids go through as they grow up. But sometimes it's hard to tell if a child is just going through a "phase," or perhaps showing signs of something more serious.

Recently, doctors have been diagnosing more children with bipolar disorder,1 sometimes called manic-depressive illness. But what does this illness really mean for a child?

This booklet is a guide for parents who think their child may have symptoms of bipolar disorder, or parents whose child has been diagnosed with the illness.

This booklet discusses bipolar disorder in children and teens. For information on bipolar disorder in adults, see the National Institute of Mental Health (NIMH) booklet "Bipolar Disorder."

What is Bipolar Disorder? Bipolar disorder, also known as manic-depressive illness, is a brain disorder that causes unusual shifts in mood and energy. It can also make it hard for someone to carry out day-to-day tasks, such as going to school or hanging out with friends. Symptoms of bipolar disorder are severe. They are different from the normal ups and downs that everyone goes through from time to time. They can result in damaged relationships, poor school performance, and even suicide. But bipolar disorder can be treated, and people with this illness can lead full and productive lives.

Bipolar disorder often develops in a person's late teens or early adult years, but some people have their first symptoms during childhood. At least half of all cases start before age 25.2

What are common symptoms of bipolar disorder in children and teens?

Youth with bipolar disorder experience unusually intense emotional states that occur in distinct periods called "mood episodes." An overly joyful or overexcited state is called a manic episode, and an extremely sad or hopeless state is called a depressive episode. Sometimes, a mood episode includes symptoms of both mania and depression. This is called a mixed state. People with bipolar disorder also may be explosive and irritable during a mood episode.

Extreme changes in energy, activity, sleep, and behavior go along with these changes in mood. Symptoms of bipolar disorder are described below.

Symptoms of mania include:

Mood Changes

  • Being in an overly silly or joyful mood that's unusual for your child. It is different from times when he or she might usually get silly and have fun.
  • Having an extremely short temper. This is an irritable mood that is unusual.

Behavioral Changes

  • Sleeping little but not feeling tired
  • Talking a lot and having racing thoughts
  • Having trouble concentrating, attention jumping from one thing to the next in an unusual way
  • Talking and thinking about sex more often
  • Behaving in risky ways more often, seeking pleasure a lot, and doing more activities than usual.

Symptoms of depression include:

Mood Changes

  • Being in a sad mood that lasts a long time
  • Losing interest in activities they once enjoyed
  • Feeling worthless or guilty.

Behavioral Changes

  • Complaining about pain more often, such as headaches, stomach aches, and muscle pains
  • Eating a lot more or less and gaining or losing a lot of weight
  • Sleeping or oversleeping when these were not problems before
  • Losing energy
  • Recurring thoughts of death or suicide.

It's normal for almost every child or teen to have some of these symptoms sometimes. These passing changes should not be confused with bipolar disorder.

Symptoms of bipolar disorder are not like the normal changes in mood and energy that everyone has now and then. Bipolar symptoms are more extreme and tend to last for most of the day, nearly every day, for at least one week. Also, depressive or manic episodes include moods very different from a child's normal mood, and the behaviors described in the chart above may start at the same time. Sometimes the symptoms of bipolar disorder are so severe that the child needs to be treated in a hospital.

In addition to mania and depression, bipolar disorder can cause a range of moods, as shown on the scale below. One side of the scale includes severe depression, moderate depression, and mild low mood. Moderate depression may cause less extreme symptoms, and mild low mood is called dysthymia when it is chronic or long-term. In the middle of the scale is normal or balanced mood.

Scale of a Range of Moods for Bipolar Disorder

Sometimes, a child may have more energy and be more active than normal, but not show the severe signs of a full-blown manic episode. When this happens, it is called hypomania, and it generally lasts for at least four days in a row. Hypomania causes noticeable changes in behavior, but does not harm a child's ability to function in the way mania does.

What affects a child's risk of getting bipolar disorder? Bipolar disorder tends to run in families. Children with a parent or sibling who has bipolar disorder are four to six times more likely to develop the illness, compared with children who do not have a family history of bipolar disorder.3 However, most children with a family history of bipolar disorder will not develop the illness. Compared with children whose parents do not have bipolar disorder, children whose parents have bipolar disorder may be more likely to have symptoms of anxiety disorders and attention deficit hyperactivity disorder (ADHD).4

Several studies show that youth with anxiety disorders are more likely to develop bipolar disorder than youth without anxiety disorders. However, anxiety disorders are very common in young people. Most children and teens with anxiety disorders do not develop bipolar disorder.5, 6

At this time, there is no way to prevent bipolar disorder. NIMH is currently studying how to limit or delay the first symptoms in children with a family history of the illness.

Also see the section in this booklet called "What illnesses often co-exist with bipolar disorder in children and teens?"

How does bipolar disorder affect children and teens differently than adults?

Bipolar disorder that starts during childhood or during the teen years is called early-onset bipolar disorder. Early-onset bipolar disorder seems to be more severe than the forms that first appear in older teens and adults.7,8Youth with bipolar disorder are different from adults with bipolar disorder. Young people with the illness appear to have more frequent mood switches, are sick more often, and have more mixed episodes.8

Watch out for any sign of suicidal thinking or behaviors. Take these signs seriously. On average, people with early-onset bipolar disorder have greater risk for attempting suicide than those whose symptoms start in adulthood.7, 9 One large study on bipolar disorder in children and teens found that more than one-third of study participants made at least one serious suicide attempt.10 Some suicide attempts are carefully planned and others are not. Either way, it is important to understand that suicidal feelings and actions are symptoms of an illness that must be treated.

How is bipolar disorder detected in children and teens?

No blood tests or brain scans can diagnose bipolar disorder. However, a doctor may use tests like these to help rule out other possible causes for your child's symptoms. For example, the doctor may recommend testing for problems in learning, thinking, or speech and language.11 A careful medical exam may also detect problems that commonly co-occur with bipolar disorder and need to be treated, such as substance abuse.

Doctors who have experience with diagnosing early-onset bipolar disorder, such as psychiatrists, psychologists, or other mental health specialists, will ask questions about changes in your child's mood. They will also ask about sleep patterns, activity or energy levels, and if your child has had any other mood or behavioral disorders. The doctor may also ask whether there is a family history of bipolar disorder or other psychiatric illnesses, such as depression or alcoholism.

Doctors usually diagnose mental disorders using guidelines from the Diagnostic and Statistical Manual of Mental Disorders, or DSM. According to the DSM, there are four basic types of bipolar disorder:

  • Bipolar I Disorder is mainly defined by manic or mixed episodes that last at least seven days, or by manic symptoms that are so severe that the person needs immediate hospital care. Usually, the person also has depressive episodes, typically lasting at least two weeks. The symptoms of mania or depression must be a major change from the person's normal behavior.
  • Bipolar II Disorder is defined by a pattern of depressive episodes shifting back and forth with hypomanic episodes, but no full-blown manic or mixed episodes.
  • Bipolar Disorder Not Otherwise Specified (BP-NOS) is diagnosed when a person has symptoms of the illness that do not meet diagnostic criteria for either bipolar I or II. The symptoms may not last long enough, or the person may have too few symptoms, to be diagnosed with bipolar I or II. However, the symptoms are clearly out of the person's normal range of behavior.
  • Cyclothymic Disorder, or Cyclothymia, is a mild form of bipolar disorder. People who have cyclothymia have episodes of hypomania that shift back and forth with mild depression for at least two years (one year for children and adolescents). However, the symptoms do not meet the diagnostic requirements for any other type of bipolar disorder.

When children have manic symptoms that last for less than four days, experts recommend that they be diagnosed with BP-NOS. Some scientific evidence indicates that about one-third of these young people will develop longer episodes within a few years. If so, they meet the criteria for bipolar I or II.12

Also, researchers are working on whether certain symptoms mean a child should be diagnosed with bipolar disorder. For example, scientists are studying children with very severe, chronic irritability and symptoms of ADHD, but no clear episodes of mania. Some experts think these children should be diagnosed with mania. At the same time, there is scientific evidence that suggests these irritable children are different from children with bipolar disorder in the following key areas: the outcome of their illness, family history, and brain function.13-16

When you talk to your child's doctor or a mental health specialist, be sure to ask questions. Getting answers helps you understand the terms they use to describe your child's symptoms.

What illnesses often co-exist with bipolar disorder in children and teens? Several illnesses may develop in people with bipolar disorder.

  • Alcoholism. Adults with bipolar disorder are at very high risk of developing a substance abuse problem. Young people with bipolar disorder may have the same risk.
  • ADHD. Many children with bipolar disorder have a history of ADHD.17 One study showed that ADHD is more common in people whose bipolar disorder started during childhood, compared with people whose bipolar disorder started later in life.7 Children who have co-occurring ADHD and bipolar disorder may have difficulty concentrating and controlling their activity. This may happen even when they are not manic or depressed.
  • Anxiety Disorders. Anxiety disorders, such as separation anxiety and generalized anxiety disorder, also commonly co-occur with bipolar disorder. This may happen in both children and adults. Children who have both types of disorders tend to develop bipolar disorder at a younger age and have more hospital stays related to mental illness.18
  • Other Mental Disorders. Some mental disorders cause symptoms similar to bipolar disorder. Two examples are major depression (sometimes called unipolar depression) and ADHD. If you look at symptoms only, there is no way to tell the difference between major depression and a depressive episode in bipolar disorder. For this reason, be sure to tell a diagnosing doctor of any past manic symptoms or episodes your child may have had. In contrast, ADHD does not have episodes. ADHD symptoms may resemble mania in some ways, but they tend to be more constant than in a manic episode of bipolar disorder.

What treatments are available for children and teens with bipolar disorder?

To date, there is no cure for bipolar disorder. However, treatment with medications, psychotherapy (talk therapy), or both may help people get better.

It's important for you to know that children sometimes respond differently to psychiatric medications than adults do.

To treat children and teens with bipolar disorder, doctors often rely on information about treating adults. This is because there haven't been many studies on treating young people with the illness, although several have been started recently.

One large study with adults funded by NIMH is the Systematic Treatment Enhancement Program for Bipolar Disorder (visit STEP-BD for more information). This study found that treating adults with medications and intensive psychotherapy for about nine months helped them get better. These adults got better faster and stayed well longer than adults treated with less intensive psychotherapy for six weeks.19 Combining medication treatment and psychotherapies may help young people with early-onset bipolar disorder as well.11 However, it's important for you to know that children sometimes respond differently to psychiatric medications than adults do.

Medications

Before starting medication, the doctor will want to determine your child's physical and mental health. This is called a "baseline" assessment. Your child will need regular follow-up visits to monitor treatment progress and side effects. Most children with bipolar disorder will also need long-term or even lifelong medication treatment. This is often the best way to manage symptoms and prevent relapse, or a return of symptoms.11

It's better to limit the number and dose of medications. A good way to remember this is "start low, go slow." Talk to the psychiatrist about using the smallest amount of medication that helps relieve your child's symptoms. To judge a medication's effectiveness, your child may need to take a medication for several weeks or months. The doctor needs this time to decide whether to switch to a different medication. Because children's symptoms are complex, it's not unusual for them to need more than one type of medication.20

Keep a daily log of your child's most troublesome symptoms. Doing so can make it easier for you, your child, and the doctor to decide whether a medication is helpful. Also, be sure to tell the psychiatrist about all other prescription drugs, over-the-counter medications, or natural supplements your child is taking. Taking certain medications and supplements together may cause unwanted or dangerous effects.

Some of the types of medications generally used to treat bipolar disorder are listed below. Information on medications can change. For the most up to date information on use and side effects contact the U.S. Food and Drug Administration (FDA) website. You can also find more information in the NIMH Medications booklet.

To date, lithium (sometimes known as Eskalith), risperidone (Risperdal), and aripiprazole (Abilify) are the only medications approved by the U.S. Food and Drug Administration (FDA) to treat bipolar disorder in young people.

Lithium is a type of medication called a mood stabilizer. It can help treat and prevent manic symptoms11 in children ages 12 and older.21 In addition, there is some evidence that lithium might act as an antidepressant and help prevent suicidal behavior.22 However, FDA's approval of lithium was based on treatment studies in adults. In fact, some experts say the FDA might not approve giving lithium to bipolar youth if the agency were to review this treatment today.

Lithium Poisoning

Children may be showing early signs of lithium poisoning if they develop the following:

  • Diarrhea
  • Drowsiness
  • Muscle weakness
  • Lack of coordination
  • Vomiting.

Take your child to the emergency room if he or she is taking lithium and has these symptoms. You should know that the risk of lithium poisoning goes up when a child becomes dehydrated. Make sure your child has enough to drink when he or she has a fever or sweats, such as when playing sports in the hot summer.

Risperidone and aripiprazole are a type of medication called an atypical, or second-generation, antipsychotic. These medications are called "atypical" to set them apart from earlier types of medications, called conventional or first generation antipsychotics. Short-term treatment with risperidone can help reduce symptoms of mania or mixed mania in children ages 10 and up. Aripiprazole is approved to treat these symptoms in children 10-17 years old who have bipolar I.21

Your child's psychiatrist may recommend other types of medication, which are listed below. Studies in adults with bipolar disorder show these medications may be helpful. However, these medications have not been approved by the FDA to treat bipolar disorder in children.

Anticonvulsant medications are commonly prescribed to treat seizures, but these medications can help stabilize moods too. They may be very helpful for difficult-to-treat bipolar episodes. For some children, anticonvulsants may work better than lithium. Not every child can take lithium. Examples of anticonvulsant medications include:

  • Valproic acid or divalproex sodium (Depakote)
  • Lamotrigine (Lamictal).

Should girls take valproic acid?

Young girls taking valproic acid should be monitored carefully by a doctor. Valproic acid may increase levels of testosterone (a male hormone) in teenage girls and lead to polycystic ovary syndrome (PCOS) in women who begin taking the medication before age 20.23,24 PCOS is a serious condition that causes a woman's eggs to develop into cysts, or fluid-filled sacs. The cysts then collect in the ovaries instead of being released by monthly periods.

If PCOS is linked to treatment with valproic acid, the doctor will take the person off this medication. Most PCOS symptoms will improve after switching or stopping treatment with valproic acid.25

Valproic acid, lamotrigine, and other anticonvulsant medications have an FDA warning. The warning states that their use may increase the risk of suicidal thoughts and behaviors. People taking anticonvulsant medications for bipolar or other illnesses should be closely monitored for new or worsening symptoms of depression, suicidal thoughts or behavior, or any unusual changes in mood or behavior. People taking these medications should not make any changes without talking to their health care professional.

Atypical antipsychotic medications are sometimes used to treat symptoms of bipolar disorder in children. These medications are called "atypical" to set them apart from earlier types of medications, called conventional or first-generation antipsychotics. In addition to risperidone and aripiprazole, atypical antipsychotic medications include:

  • Olanzapine (Zyprexa)
  • Quetiapine (Seroquel)
  • Ziprasidone (Geodon).

Antidepressant medications are sometimes used to treat symptoms of depression in bipolar disorder. Doctors who prescribe antidepressants for bipolar disorder usually prescribe a mood stabilizer or anticonvulsant medication at the same time. If your child takes only an antidepressant, he or she may be at risk of switching to mania or hypomania. He or she may also be at risk of developing rapid cycling symptoms.26 Rapid cycling is when someone has four or more episodes of major depression, mania, hypomania, or mixed symptoms within a year.27 Some antidepressants that may be prescribed to treat symptoms of bipolar depression are:

  • Fluoxetine (Prozac)
  • Paroxetine (Paxil)
  • Sertraline (Zoloft).

However, results on effectiveness of antidepressants for treating bipolar depression are mixed. The STEP-BD study showed that, in adults, adding an antidepressant to a mood stabilizer is no more effective in treating depression than using a mood stabilizer alone.28

FDA Warning on Antidepressants

Antidepressants are safe and popular, but some studies have suggested that they may have unintentional effects on some people, especially in adolescents and young adults. The FDA warning says that patients of all ages taking antidepressants should be watched closely, especially during the first few weeks of treatment. Possible side effects to look for are depression that gets worse, suicidal thinking or behavior, or any unusual changes in behavior such as trouble sleeping, agitation, or withdrawal from normal social situations. Families and caregivers should report any changes to the doctor. The latest information from the FDA can be found at http://www.fda.gov.

Some medications are better at treating one type of bipolar symptom than another. For example, lamotrigine (Lamictal) seems to be helpful in controlling depressive symptoms of bipolar disorder.11

What are the side effects of these medications? Before your child starts taking a new medication, talk with the doctor or pharmacist about possible risks and benefits of taking that medication.

The doctor or pharmacist can also answer questions about side effects. Over the last decade, treatments have improved, and some medications now have fewer or more tolerable side effects than past treatments. However, everyone responds differently to medications, and in some cases, side effects may not appear until a person has taken a medication for some time.

If your child develops any severe side effects from a medication, talk to the doctor who prescribed it as soon as possible. The doctor may change the dose or prescribe a different medication. Children and teens being treated for bipolar disorder should not stop taking a medication without talking to a doctor first. Suddenly stopping a medication may lead to "rebound," or worsening of bipolar disorder symptoms or other uncomfortable or potentially dangerous withdrawal effects.

The following sections describe some common side effects of the different types of medications used to treat bipolar disorder.

  • Mood Stabilizers
  • In some cases, lithium can cause side effects such as:
    • Restlessness
    • Frequent urination
    • Dry mouth
    • Bloating or indigestion
    • Acne
    • Joint or muscle pain
    • Brittle nails or hair.29

    Lithium may cause other side effects not listed here. Tell the doctor about bothersome or unusual side effects as soon as possible.

    If your child is being treated with lithium, it is important for him or her to see the treating doctor regularly. The doctor needs to check the levels of lithium in the child's blood, as well as kidney function and thyroid function.

    Each mood stabilizing medication is different and can cause different types of side effects. Some common side effects of lamotrigine and valproic acid include:

    • Drowsiness
    • Dizziness
    • Headache
    • Diarrhea
    • Constipation
    • Heartburn
    • Mood swings
    • Stuffed or runny nose, or other cold-like symptoms.30, 31

    These medications may also be linked with rare but serious side effects. Talk with the treating doctor or a pharmacist to make sure you understand signs of serious side effects for the specific medications your child is taking.

  • Atypical Antipsychotics
  • Some people have side effects when they start taking atypical antipsychotics. Most side effects go away after a few days and often can be managed successfully. People who are taking antipsychotics should not drive until they adjust to their new medication. Side effects of many antipsychotics include:
    • Drowsiness
    • Dizziness when changing positions
    • Blurred vision
    • Rapid heartbeat
    • Sensitivity to the sun
    • Skin rashes
    • Menstrual problems for girls
    • Weight gain.

    Atypical antipsychotic medications can cause major weight gain and changes in metabolism. This may increase a person's risk of getting diabetes and high cholesterol.32 While taking an atypical antipsychotic medication, your child's weight, glucose levels, and lipid levels should be monitored regularly by a doctor.

    In rare cases, long-term use of atypical antipsychotic drugs may lead to a condition called tardive dyskinesia (TD). The condition causes muscle movements that commonly occur around the mouth. A person with TD cannot control these movements. TD can range from mild to severe, and it cannot always be cured. Sometimes people with TD recover partially or fully after they stop taking the drug.

  • Antidepressants
  • The antidepressants most commonly prescribed for treating symptoms of bipolar disorder can also cause mild side effects that usually do not last long. These can include:
    • Headache, which usually goes away within a few days.
    • Nausea (feeling sick to your stomach), which usually goes away within a few days.
    • Sleep problems, such as sleeplessness or drowsiness. This may occur during the first few weeks but then goes away. To help lessen these effects, sometimes the medication dose can be reduced, or the time of day it is taken can be changed.
    • Agitation (feeling jittery)
    • Sexual problems, which can affect both men and women. These include reduced sex drive and problems having and enjoying sex.

    Some antidepressants are more likely to cause certain side effects than other antidepressants. Your doctor or pharmacist can answer questions about these medications. Any unusual reactions or side effects should be reported to a doctor immediately.

    For the most up-to-date information on medications for treating bipolar disorder and their side effects, please see the online NIMH Medications booklet.

Sexual Activity, Pregnancy, and Teens with Bipolar Disorder

Many teens make risky choices about sex. The U.S. Centers for Disease Control and Prevention (CDC) recently reported that 26 percent of teenage girls in the United States have at least one of the four most common sexually transmitted diseases.33 This suggests that many teens are having unprotected sex or taking part in other risky behaviors.

Bipolar disorder is also linked with impulsive and risky choices. Teenage girls with bipolar disorder who are pregnant or may become pregnant face special challenges because medications for the illness may have harmful effects on a developing fetus or nursing infant.34 Specifically, lithium and valproic acid should not be used during pregnancy. Also, some medications may reduce the effectiveness of birth control pills.35 For more information on managing bipolar disorder during and after pregnancy, see the NIMH booklet Bipolar Disorder.

Psychotherapy

In addition to medication, psychotherapy ("talk" therapy) can be an effective treatment for bipolar disorder. Studies in adults show that it can provide support, education, and guidance to people with bipolar disorder and their families. Psychotherapy may also help children keep taking their medications to stay healthy and prevent relapse.

Children and teens may also benefit from therapies that address problems at school, work, or in the community.

Some psychotherapy treatments used for bipolar disorder include:

  • Cognitive behavioral therapy helps young people with bipolar disorder learn to change harmful or negative thought patterns and behaviors.
  • Family-focused therapy includes a child's family members. It helps enhance family coping strategies, such as recognizing new episodes early and helping their child. This therapy also improves communication and problem-solving.
  • Interpersonal and social rhythm therapy helps children and teens with bipolar disorder improve their relationships with others and manage their daily routines. Regular daily routines and sleep schedules may help protect against manic episodes.
  • Psychoeducation teaches young people with bipolar disorder about the illness and its treatment. This treatment helps people recognize signs of relapse so they can seek treatment early, before a full-blown episode occurs. Psychoeducation also may be helpful for family members and caregivers.

Other types of therapies may be tried as well, or used along with those mentioned above. The number, frequency, and type of psychotherapy sessions should be based on your child's treatment needs.

A licensed psychologist, social worker, or counselor typically provides these therapies. This professional often works with your child's psychiatrist to monitor care. Some may also be licensed to prescribe medications; check the laws in your state. For more information, see the Substance Abuse and Mental Health Services Administration web page on choosing a mental health therapist.

In addition to getting therapy to reduce symptoms of bipolar disorder, children and teens may also benefit from therapies that address problems at school, work, or in the community. Such therapies may target communication skills, problem-solving skills, or skills for school or work. Other programs, such as those provided by social welfare programs or support and advocacy groups, can help as well.11

Some children with bipolar disorder may also have learning disorders or language problems.36 Your child's school may need to make accommodations that reduce the stresses of a school day and provide proper support or interventions.

What can children and teens with bipolar disorder expect from treatment? There is no cure for bipolar disorder, but it can be treated effectively over the long term. Doctors and families of children with bipolar disorder should keep track of symptoms and treatment effects to decide whether changes to the treatment plan are needed.

Sometimes a child may switch from one type of bipolar disorder to another. This calls for a change in treatment. In the largest study to date on childhood bipolar disorder, the NIMH-funded Course and Outcome of Bipolar Illness in Youth (COBY) study, researchers found that roughly one out of three children with BP-NOS later switched to bipolar I or II. Also, roughly one out of five children who started out with a diagnosis of bipolar II switched to bipolar I.8 Because different medications may be more helpful for one type of symptom than another (manic or depressive), your child may need to change medications or try different treatments if his or her symptoms change.

The COBY study also showed that treatment helped around 70 percent of children with bipolar disorder recover from their most recent episode (either manic or depressive). In this study, recovery meant having two or fewer symptoms for at least eight weeks in a row. On average, it took a little over a year and a half to recover. However, within the next year or so, symptoms returned in half of the children who recovered. Children with bipolar I or II tended to recover faster than those with BP-NOS, but their symptoms returned more frequently as well.

If your child has other psychiatric illnesses, such as an anxiety disorder, eating disorder, or substance abuse disorder, he or she may be more likely to experience a relapse - especially depressive symptoms.37 Scientists are unsure how these co-existing illnesses increase the chance of relapse.

Working closely with your child's doctor and therapist and talking openly about treatment choices can make treatment more effective. You may need to talk about changing the treatment plan occasionally to help your child manage the illness most effectively.

Also, you may wish to keep a chart of your child's daily mood symptoms, treatments, sleep patterns, and life events, which can help you and your child better understand the illness. Sometimes this is called a mood chart or a daily life chart. It can help the doctor track and treat the illness more effectively. Examples of mood charts can be found on the Internet.

Where can families of children with bipolar disorder get help?

As with other serious illnesses, taking care of a child with bipolar disorder is incredibly hard on the parents, family, and other caregivers. Caregivers often must tend to the medical needs of their child while dealing with how it affects their own health. The stress that caregivers are under may lead to missed work or lost free time. It can strain relationships with people who do not understand the situation and lead to physical and mental exhaustion.

Stress from caregiving can make it hard to cope with your child's bipolar symptoms. One study shows that if a caregiver is under a lot of stress, his or her loved one has more trouble sticking to the treatment plan, which increases the chance for a major bipolar episode.38 It is important to take care of your own physical and mental health. You may also find it helpful to join a local support group. If your child's illness prevents you from attending a local support group, try an online support group.

Where can I go for help?

If you are unsure where to go for help, ask your family doctor. Others who can help are listed below.

  • Mental health specialists, such as psychiatrists, psychologists, social workers, or mental health counselors
  • Health maintenance organizations
  • Community mental health centers
  • Hospital psychiatry departments and outpatient clinics
  • Mental health programs at universities or medical schools
  • State hospital outpatient clinics
  • Family services, social agencies, or clergy
  • Peer support groups
  • Private clinics and facilities
  • Employee assistance programs
  • Local medical and/or psychiatric societies.
  • You can also check the phone book under "mental health," "health," "social services," "hotlines," or "physicians" for phone numbers and addresses. An emergency room doctor can also provide temporary help and can tell you where and how to get further help.

What if my child is in crisis?

If you think your child is in crisis:

  • Call your doctor
  • Call 911 or go to a hospital emergency room to get immediate help or ask a friend or family member to help you do these things
  • Call the toll-free, 24-hour hotline of the National Suicide Prevention Lifeline at 1-800-273-TALK (1-800-273-8255); TTY: 1-800-799-4TTY (4889) to talk to a trained counselor
  • Make sure your child is not left alone.

Citations

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2. Kessler RC, Berglund P, Demler O, Jin R, Merikangas KR, Walters EE. Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry. 2005 Jun;62(6):593-602.

3. Nurnberger JI, Jr., Foroud T. Genetics of bipolar affective disorder. Curr Psychiatry Rep. 2000 Apr;2(2):147-157.

4. Chang K, Steiner H, Ketter T. Studies of offspring of parents with bipolar disorder. Am J Med Genet C Semin Med Genet. 2003 Nov 15;123(1):26-35.

5. Johnson JG, Cohen P, Brook JS. Associations between bipolar disorder and other psychiatric disorders during adolescence and early adulthood: a community-based longitudinal investigation. Am J Psychiatry. 2000 Oct;157(10):1679-1681.

6. Bruckl TM, Wittchen HU, Hofler M, Pfister H, Schneider S, Lieb R. Childhood separation anxiety and the risk of subsequent psychopathology: Results from a community study. Psychother Psychosom. 2007 76(1):47-56.

7. Perlis RH, Miyahara S, Marangell LB, Wisniewski SR, Ostacher M, DelBello MP, Bowden CL, Sachs GS, Nierenberg AA. Long-term implications of early onset in bipolar disorder: data from the first 1000 participants in the systematic treatment enhancement program for bipolar disorder (STEP-BD). Biol Psychiatry. 2004 May 1;55(9):875-881.

8. Birmaher B, Axelson D, Strober M, Gill MK, Valeri S, Chiappetta L, Ryan N, Leonard H, Hunt J, Iyengar S, Keller M. Clinical course of children and adolescents with bipolar spectrum disorders. Arch Gen Psychiatry. 2006 Feb;63(2):175-183.

9. Bellivier F, Golmard JL, Henry C, Leboyer M, Schurhoff F. Admixture analysis of age at onset in bipolar I affective disorder. Arch Gen Psychiatry. 2001 May;58(5):510-512.

10. Goldstein TR, Birmaher B, Axelson D, Ryan ND, Strober MA, Gill MK, Valeri S, Chiappetta L, Leonard H, Hunt J, Bridge JA, Brent DA, Keller M. History of suicide attempts in pediatric bipolar disorder: factors associated with increased risk. Bipolar Disord. 2005 Dec;7(6):525-535.

11. McClellan J, Kowatch R, Findling RL. Practice parameter for the assessment and treatment of children and adolescents with bipolar disorder. J Am Acad Child Adolesc Psychiatry. 2007 Jan;46(1):107-125.

12. Axelson D, Birmaher B, Strober M, Gill MK, Valeri S, Chiappetta L, Ryan N, Leonard H, Hunt J, Iyengar S, Bridge J, Keller M. Phenomenology of children and adolescents with bipolar spectrum disorders. Arch Gen Psychiatry. 2006 Oct;63(10):1139-1148.

13. Tillman R, Geller B. Definitions of rapid, ultrarapid, and ultradian cycling and of episode duration in pediatric and adult bipolar disorders: a proposal to distinguish episodes from cycles. J Child Adolesc Psychopharmacol. 2003 Fall;13(3):267-271.

14. Brotman MA, Kassem L, Reising MM, Guyer AE, Dickstein DP, Rich BA, Towbin KE, Pine DS, McMahon FJ, Leibenluft E. Parental diagnoses in youth with narrow phenotype bipolar disorder or severe mood dysregulation. Am J Psychiatry. 2007 Aug;164(8):1238-1241.

15. Brotman MA, Schmajuk M, Rich BA, Dickstein DP, Guyer AE, Costello EJ, Egger HL, Angold A, Pine DS, Leibenluft E. Prevalence, clinical correlates, and longitudinal course of severe mood dysregulation in children. Biol Psychiatry. 2006 Nov 1;60(9):991-997.

16. Rich BA, Schmajuk M, Perez-Edgar KE, Fox NA, Pine DS, Leibenluft E. Different psychophysiological and behavioral responses elicited by frustration in pediatric bipolar disorder and severe mood dysregulation. Am J Psychiatry. 2007 Feb;164(2):309-317.

17. Tillman R, Geller B, Bolhofner K, Craney JL, Williams M, Zimerman B. Ages of onset and rates of syndromal and subsyndromal comorbid DSM-IV diagnoses in a prepubertal and early adolescent bipolar disorder phenotype. J Am Acad Child Adolesc Psychiatry. 2003 Dec;42(12):1486-1493.

18. Dickstein DP, Rich BA, Binstock AB, Pradella AG, Towbin KE, Pine DS, Leibenluft E. Comorbid anxiety in phenotypes of pediatric bipolar disorder. J Child Adolesc Psychopharmacol. 2005 Aug;15(4):534-548.

19. Miklowitz DJ, Otto MW, Frank E, Reilly-Harrington NA, Wisniewski SR, Kogan JN, Nierenberg AA, Calabrese JR, Marangell LB, Gyulai L, Araga M, Gonzalez JM, Shirley ER, Thase ME, Sachs GS. Psychosocial treatments for bipolar depression: a 1-year randomized trial from the Systematic Treatment Enhancement Program (STEP). Arch Gen Psychiatry. 2007 Apr;64(4):419-426.

20. Bhangoo RK, Lowe CH, Myers FS, Treland J, Curran J, Towbin KE, Leibenluft E. Medication use in children and adolescents treated in the community for bipolar disorder. J Child Adolesc Psychopharmacol. 2003 Winter;13(4):515-522.

21. U.S. Food and Drug Administration. Pediatric Exclusivity Labeling Changes http://www.fda.gov/downloads/ScienceResearch/SpecialTopics/PediatricTherapeuticsResearch/UCM163159.pdf. Accessed on August 19, 2008.

22. Freeman MP, Freeman SA. Lithium: clinical considerations in internal medicine. Am J Med. 2006 Jun;119(6):478-481.

23. Vainionpaa LK, Rattya J, Knip M, Tapanainen JS, Pakarinen AJ, Lanning P, Tekay A, Myllyla VV, Isojarvi JI. Valproate-induced hyperandrogenism during pubertal maturation in girls with epilepsy. Ann Neurol. 1999 Apr;45(4):444-450.

24. Joffe H, Cohen LS, Suppes T, McLaughlin WL, Lavori P, Adams JM, Hwang CH, Hall JE, Sachs GS. Valproate is associated with new-onset oligoamenorrhea with hyperandrogenism in women with bipolar disorder. Biol Psychiatry. 2006 Jun 1;59(11):1078-1086.

25. Joffe H, Cohen LS, Suppes T, Hwang CH, Molay F, Adams JM, Sachs GS, Hall JE. Longitudinal follow-up of reproductive and metabolic features of valproate-associated polycystic ovarian syndrome features: A preliminary report. Biol Psychiatry. 2006 Dec 15;60(12):1378-1381.

26. Thase ME, Sachs GS. Bipolar depression: pharmacotherapy and related therapeutic strategies. Biol Psychiatry. 2000 Sep 15;48(6):558-572.

27. Akiskal HS. "Mood Disorders: Clinical Features." in Sadock BJ, Sadock VA (ed). (2005). Kaplan & Sadock's Comprehensive Textbook of Psychiatry. Lippincott Williams & Wilkins:Philadelphia.

28. Sachs GS, Nierenberg AA, Calabrese JR, Marangell LB, Wisniewski SR, Gyulai L, Friedman ES, Bowden CL, Fossey MD, Ostacher MJ, Ketter TA, Patel J, Hauser P, Rapport D, Martinez JM, Allen MH, Miklowitz DJ, Otto MW, Dennehy EB, Thase ME. Effectiveness of adjunctive antidepressant treatment for bipolar depression. N Engl J Med. 2007 Apr 26;356(17):1711-1722.

29. MedlinePlus Drug Information: Lithium. http://www.nlm.nih.gov/medlineplus/druginfo/meds/a681039.html. Accessed on Nov 19, 2007.

30. MedlinePlus Drug Information: Lamotrigine. http://www.nlm.nih.gov/medlineplus/druginfo/meds/a695007.html. Accessed on February 12, 2008.

31. MedlinePlus Drug Information: Valproic Acid. http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682412.html. Accessed on February 12, 2008.

32. Lieberman JA, Stroup TS, McEvoy JP, Swartz MS, Rosenheck RA, Perkins DO, Keefe RS, Davis SM, Davis CE, Lebowitz BD, Severe J, Hsiao JK. Effectiveness of antipsychotic drugs in patients with chronic schizophrenia. N Engl J Med. 2005 Sep 22;353(12):1209-1223.

33. Nationally Representative CDC Study Finds 1 in 4 Teenage Girls Has a Sexually Transmitted Disease. http://www.cdc.gov/stdconference/2008/media/release-11March2008.htm. Accessed on March 31, 2008.

34. Llewellyn A, Stowe ZN, Strader JR, Jr. The use of lithium and management of women with bipolar disorder during pregnancy and lactation. J Clin Psychiatry. 1998 59(Suppl 6):57-64.

35. Yonkers KA, Wisner KL, Stowe Z, Leibenluft E, Cohen L, Miller L, Manber R, Viguera A, Suppes T, Altshuler L. Management of bipolar disorder during pregnancy and the postpartum period. Am J Psychiatry. 2004 Apr;161(4):608-620.

36. McClure EB, Treland JE, Snow J, Dickstein DP, Towbin KE, Charney DS, Pine DS, Leibenluft E. Memory and learning in pediatric bipolar disorder. J Am Acad Child Adolesc Psychiatry. 2005 May;44(5):461-469.

37. Perlis RH, Ostacher MJ, Patel JK, Marangell LB, Zhang H, Wisniewski SR, Ketter TA, Miklowitz DJ, Otto MW, Gyulai L, Reilly-Harrington NA, Nierenberg AA, Sachs GS, Thase ME. Predictors of recurrence in bipolar disorder: primary outcomes from the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD). Am J Psychiatry. 2006 Feb;163(2):217-224.

38. Perlick DA, Rosenheck RA, Clarkin JF, Maciejewski PK, Sirey J, Struening E, Link BG. Impact of family burden and affective response on clinical outcome among patients with bipolar disorder. Psychiatr Serv. 2004 Sep;55(9):1029-1035.

National Institutes of Health
NIH Publication 08-3679
Revised 2008
Page last reviewed: August 31, 2010

Page last modified or reviewed by athealth on January 30, 2014

Adolescent Substance Abuse: An Interview with Howard A. Liddle, EdD

Howard Liddle, EdD, ABPP
Howard Liddle, EdD, ABPP

Athealth.com: Welcome Dr. Liddle. I would like to start by inviting you to talk about the most important recent developments in the area of adolescent substance abuse research and treatment.

Dr. Liddle: This is a very important question with historical and contemporary overtones; there are several key issues to consider here.

First and foremost, adolescent substance abuse has become a bona fide clinical specialty in its own right, with its own theory, basic and applied research, practice guidelines, and policy studies. Clinical work in the field is grounded in the knowledge of adolescent development. Today's "state of the art" treatments are not step-down adult treatments applied to teens. Rather, they are tailored to the particulars, complexities, and multiple systems that make up the teen's ecology. Additionally, there are many opportunities for research of all kinds through federal funding agencies, foundations, and state and local agencies. The existence of research centers is a testimony to the specialty's evolution. Professional and scientific organizations and many scientific publications focus on the problems, needs, and policies pertaining to adolescence. I believe we are witnessing the beginning of a renaissance period in the history of the adolescent treatment specialty.

Second, the multidisciplinary nature of the specialty should be considered a major development, as well as a rich asset. Today adolescent substance abuse is addressed by a number of people who play vital roles in the lives of adolescents: teachers, school counselors, juvenile justice representatives, primary care doctors, psychotherapists, social workers, parents, and family members. Different professional specialties have come together to make theory based, practice and research contributions to the specialty. In treatment, the new models advocate a broadly coordinated response to the needs of the patient. This response is based on a systemic and ecological conceptualization. And, the systems approach more accurately reflects the real life of the adolescent, since they're involved in multiple social ecologies--each of which makes a unique as well as a shared contribution to the developmental outcomes of each teen. In treatment, therapists have to engage the adolescent in a productive manner; that really means understanding the subtleties and complexities of the teen's world. A "distant" stance does not facilitate the change process. There has to be a level of involvement in the life of the adolescent that demonstrates respect, interest, and caring, certainly, but also knowledge about his or her world-the world that teens live in today, not the world that teens inhabited years ago. Concurrent work with the parent is fundamental to success as well.

Third, there is an integrative spirit about combining these multiple perspectives. We now have a much broader range of understanding about adolescent substance abuse that encourages the inclusion of the unique perspectives of medicine, developmental and clinical psychology, addictions studies, social work, and other disciplines. Our job as researchers and professionals in practice is to capitalize on this synergy of information in our treatment approaches.

Additionally, we have at our disposal a wealth of information on the basic scientific aspects of drug abuse such as how these problems come about, the efficacy of treatments, and so forth. Today more than ever before treatments are predicated on accurate, scientifically based knowledge about how problems develop (for instance, what the key risk factors are for substance abuse in early adolescence) and credible evidence about the kinds of characteristics and malleable environmental circumstances, such as family life, that protect kids against drug problems. This probably accounts for the increase in effectiveness of some of today's treatments. They are based on scientifically established knowledge about kids and their circumstances, not myths or assumptions that may or may not be accurate.

This brings me to my final point. The diverse nature of the studies being done has resulted in an explosion of information in the field. Data is available on many fronts and the challenge is to organize and apply the knowledge in a way that has a direct bearing on outcomes.

This is where the Internet can be helpful, namely, in packaging and delivering the information. Clinical journals advance research, theory, and practice, but they don't always answer the questions that practitioners have on a daily basis. The goal of using these advances in knowledge to influence everyday clinical practice in the variety of clinical settings is a major theme in the field now. Some of the most important challenges are how to take research-based, effective therapies and adapt them for use in regular treatment settings.

Athealth.com: Do you see any positive trends in the area of treatment outcomes, prevention, and intervention, specifically in terms of evidence-based practice guidelines?

Dr. Liddle: Evidence-based practice guidelines and treatment manuals are now available. The American Academy of Child and Adolescent Psychiatry has practice guidelines available for a variety of adolescent disorders, including ADHD, conduct disorder, and substance abuse. While these documents are not "how-to" treatment prescriptions, they are helpful because they sketch the psychological, behavioral, and environmental terrain of a clinical problem.

The execution of clinical interventions, as always, rests with the clinician; here we are dependent on her or his level of clinical competence.

The Center for Substance Abuse Treatment has revised TIPS volumes (Treatment Improvement Protocol Series) on "adolescent treatment" and "adolescent substance abuse assessment." Additionally, there is a forthcoming TIP from CSAT on family treatment of adolescent substance abuse.

On the "how-to" front, there is progress as well. In the Project MATCH tradition, CSAT is publishing several adolescent treatment manuals from brief interventions that were tested in the very successful Cannabis Youth Treatment (CYT) Multi-site Study. The preliminary findings from this study are available at online at Chestnut Health Systems.

Within the next couple of years, CSAT will also publish more adolescent substance abuse treatment manuals as part of their exemplary treatment model initiative. This new wave of treatment manuals will demonstrate that this specialty has come of age. These are well articulated, clinically feasible, and, in many cases, effective treatments that providers and systems of care (state mental health and substance abuse systems) need to know about.

The training that needs to occur in order to follow up on the advances brought by these manuals is another matter. Will the state systems support the kind of training that is needed to bring these effective treatments and interventions to counselors working hard in the clinical trenches? I sure hope so. If they can make that kind of commitment of resources and funds-well, that would be a breakthrough in the field itself.

Athealth.com: Could you elaborate on the outcome trends?

Dr. Liddle: The outcome trends are significant:

  • Large numbers of adolescents and their families can be engaged in these new "state of the science" therapies;
  • Adolescents can change drug taking habits as a result of these therapies;
  • Adolescent involvement with legal and juvenile justice systems can be decreased dramatically;
  • Pro-social aspects of the teen's life can be facilitated--parents and families can change, kids can stop affiliating with deviant peers, and adolescent school attendance and performance can increase significantly (See reviews by Weinberg, et al, 2000; Ozechowski & Liddle, 2000).

Family-based treatments are the most effective according to some reviews (Stanton & Shadish, 1997; Williams & Change, 2000). According to these experts, one of the "state of the science" family therapies is the treatment of choice for adolescent drug problems.

Evidence Based Practice Guidelines

As far as evidence-based practice guidelines are concerned, developments here are fairly recent and the by-product not only of increasing research and attention over the past decade, but also of the problems and complexities associated with treating adolescent substance abuse. Some examples of evidence-based practice guidelines are:

  • Practice Parameters for the Assessment and Treatment of Children and Adolescents with Substance Use Disorders
  • Screening and Assessing Adolescents for Substance Use Disorders
  • Treatment of Adolescents with Substance Use Disorders

Athealth.com: What are your thoughts about the pharmacological treatment of substance abuse in adolescents?

Dr. Liddle: This is one of the most important areas and topics in our specialty but has received little research so far. Most researchers developing psychosocial interventions for drug using teens now accept that just as they must craft combination therapies in the behavioral realm, they need to devise combination therapies of behavioral and psychopharmacological interventions in the treatment of substance abuse as well.

In two of our current clinical trials, for instance, clinical teams of substance abuse counselors and psychologist supervisors work with contextually oriented child psychiatrists to determine appropriate, concurrent psychotropic medications for the kids in the treatment protocols. The child psychiatrist, of course, is fully in charge of the diagnosis and determination of the medication to be used, and she closely monitors medication compliance, reaction, and efficacy.

At the same time, the clinicians are in close contact with the child psychiatrist while they conduct the multiple systems oriented therapy-family work, school intervention, vocational planning, tutoring, other case management, and naturally, individual work with the adolescent.

These different interventions, including the use of medications for the teen or the parent, are coordinated. Interventions occur in the different realms simultaneously. The collaboration between the clinicians and the child psychiatrist is fruitful; it replicates in this clinical setting what happens in regular clinical practice. It also seems to address the practical, clinical needs of the case quite well. The medications for the teen typically target symptoms such as depression and anxiety, and they can facilitate the adolescent's or parent's participation in the individual, family, or group behaviorally-oriented treatments.

Athealth.com: What are your thoughts on inpatient treatment?

Dr. Liddle: When we consider any treatment plan or intervention it is important to bear in mind that there is, or at least there should be, a spectrum of care available (both in terms of intensity and level of restrictiveness). Residential treatment falls on the end of the spectrum. It is an intensive intervention and represents a restrictive kind of care. A stay at a residential care facility can interrupt the cycle of drug taking and the deepening of a drug using lifestyle.

Residential treatment needs to be understood as part of a continuum of services that teens and families require. Studies indicate that the quality of the post-treatment environment--particularly relationships with family and non-drug using friends and involvement in school and pro-social activities--are critical predictors of recovery. In other words, without a change in the teen's post-residential care environment, residential treatment alone is unlikely to be effective.

This is where aftercare or outpatient services enter the picture. And again, the nature and quality of these services is critically important. These services can now be based on available scientific evidence-evidence on which a transportable and clinically practical treatment model can be based.

Folks looking for residential or outpatient services need to inquire about the scientific evidence that has influenced that particular program. If the program providers are skittish about discussing this with a parent, teen, or other referral source, there may be cause for concern. Today, given the stage of development of this specialty and the spirit of accountability in all care systems, every treatment program should be based on the available clinical research evidence about how kids recover from drug problems.

Athealth.com: What do you consider the "most dangerous" drug(s) available to adolescents today?

Dr. Liddle: This is a tricky question since the response has to correspond to how we understand adolescent drug use today. That is, if we understand adolescent drug use contextually and multi-dimensionally, then the answer must not only be in terms of this or that particular drug but also include the significant psychosocial and current environmental factors that contribute to the teen's drug use or abuse.

At a basic level, the classic answer is that either heroin or cocaine is a "more dangerous" drug than alcohol or marijuana. However, if the teen is binging heavily on alcohol (going to parties, driving while intoxicated, engaging in high risk sexual behavior or alcohol-related violent acts) he or she is engaging in day to day behavior that is extremely dangerous and surely life threatening.

Additionally, as our knowledge about drugs increases, the answer to this question might change. Consider the case of marijuana, the most frequently used illegal drug in the United States. The drug's active ingredient, THC, affects nerve cells in the part of the brain where memories are formed. We have good evidence that short-term memory is severely affected by marijuana and that smoking marijuana causes some changes in the brain that are similar to those caused by cocaine, heroin, and alcohol.

Many researchers believe that these changes place a person at greater risk of becoming addicted to other drugs such as heroin or cocaine. On the basis of this new scientific information, we ought to be much more worried about drugs such as marijuana-a drug that many parents of today's teens tried or used. Consequently, these adults may make sharp distinctions between the danger of drugs such as alcohol and marijuana versus that of cocaine or heroin. These distinctions may not hold up so well when we take a contextual approach-an approach that asks about the level and nature of the multiple impairments that accompany a teen's substance use or abuse.

Drug abuse derails the developmental trajectory of a teen. Longitudinal studies about the consequences of drug abuse paint a very unsettling picture:

  • Serious mental health and relationship instability
  • Marital and job dissatisfaction and failure
  • Criminal justice involvement and legal problems
  • Alcohol and drug addiction

These are some of the negative, long-term outcomes for kids who begin using early, progress to drug abuse in the teen years, get involved in the juvenile justice system, perform poorly in school, get thrown out of school and their home, and affiliate with drug using peers.

It is a process that further solidifies a drug using lifestyle that treatment must replace.

Athealth.com: Are there simple assessment tools for substance abuse you would recommend for use by therapists who are not chemical dependency specialists?

Dr. Liddle: Yes, there are many assessment and screening instruments: The Problem Oriented Screening Instrument for Teens, the GAIN, the Personal Experience Inventory, and the Teen Services Review.

Athealth.com: Establishing a therapeutic alliance with an adolescent sounds fairly intimidating to most professionals. Do you have any special tips to offer?

Dr. Liddle: I like the fact that you chose the word intimidating. There really is a lot of truth to that for therapists. Let's talk about your vignette first, and then I will say a few words about intimidation and therapists.

Athealth.com: Let's discuss our clinical vignette.

A 15-year-old girl is brought in for her first visit by her mother. The mother reports that the client has been using alcohol since age 11, marijuana since age 14, and the mother suspects that the daughter is also using ecstasy with her 23-year-old boyfriend. The mother is hysterical and is threatening to kick her daughter out of the home. The client has had several issues with school (one suspension, missing school, etc.) and has recently been arrested for possession.

Dr. Liddle: Clinically, there are numerous questions to be explored. A major challenge is to come up with a case conceptualization that leads to comprehensive, well-coordinated therapeutic action. A treatment program using today's best therapies addresses multiple aspects of a teenager's life simultaneously.

Let's take a look at the risk factors that are presented:

  • Here is a young girl who is already advancing along the continuum of drug abuse by engaging in increasingly dangerous drug abuse. Early use (age 11 clearly qualifies as early initiation) is a strong predictor of the development of an abuse diagnosis as well as a host of other poor developmental outcomes. Alcohol experimentation and use at age 11 would make a therapist think that there must be alcohol available in the girl's house and that the parent or guardian is drinking and/or laissez faire about the girl's risky behavior./li>
  • She is at risk for being put out of her home.
  • The relationship with her mother is quite strained. Parent-teen relationship factors are among the strongest predictors of use and, on the other side of the coin, they are among the strongest protective, or risk buffering factors, against drug use and deviance in general. Even after problem behaviors, including drug use, have begun, parenting skills and the family environment matter. In the context of certain forms of treatment, family relationships can be a very strong antidote to deviance and the slide toward serious problems.
  • She is involved in a suspect and advanced relationship with an adult. This circumstance, in combination with her drug use, is very deleterious. The girl's development is both immature and accelerated. Circumstances such as these accelerate or catapult development into areas that the teen may be emotionally, psychologically, and developmentally unprepared to meet, especially in terms of appreciating the risks and consequences of behavior.
  • Her school problems show a lack of connection and represent missed opportunities for her to develop needed competencies. Lack of education opens the door to an escalation of life problems. Expulsion from regular school, the slide toward alternative schools, and then no school at all-these are dangerous and also predictive of a tough road ahead.
  • Legal problems requiring a response from the juvenile justice system can represent the straw that breaks the camel's back. Juvenile justice systems (drug court models, collaboration with juvenile court judges) are not necessarily sympathetic to therapeutic jurisprudence philosophy (preferring to build more prisons to warehouse younger and younger offenders). Depending on the jurisdiction, the level of coordination between juvenile court, the treatment provider, and the skill that the treatment provider possesses in coordinating a treatment program that fits, hand in glove, with the sanctions that are imposed by the juvenile court, this girl's involvement in the juvenile justice system could be like that of so many other kids: filled with punishment and devoid of any opportunity to participate in scientifically proven treatments.

A clinician here would be worried not only about this list of clear and present dangers, but also about the interaction, current trajectory, and pace of acceleration of this girl's problems. Teen problems, drugs, behavior problems, risky sexual practices, and driving while intoxicated--these all correlate with becoming disconnected from social institutions that are important to development (i.e. schools, religious or faith based institutions, pro-social peers groups, and families).

In a situation of this sort, double, triple, or quadruple trouble can occur. When so much risk is present, the odds turn more and more against you, and something is bound to give. One problem leads to and compounds the next: school expulsion creates tension at home; legal and juvenile justice problems create less opportunity for attention to the underlying causes of problem behaviors, and so forth.

As a teen is dislocated from developmentally important, indeed vital, social institutions, he/she is further disconnected from mainstream life. In these situations the teen has fewer opportunities to develop needed competencies and more opportunities for affiliation with deviant peers. An insidious pessimism can overtake teens as well as parents. Failure in a treatment program (and the treatment program's failure to help them), failure in school, and failure in and by families creates a powerful spiral of pain, pessimism, and doom.

It is this progression that we seek to decelerate and eventually reroute. To that end, therapists are taught not only about the risk and protective factors (how to block or facilitate them) but also what we could call the "physics" of a situation-the relationship between cascading problems and terrible life outcomes. This "interaction effect," the negative synergy that can exist between problem areas, can saturate the lives of those who enter treatment.

Much of the initial work involves addressing the teen's or family's emotional reactions to the circumstances. Our treatments are very practical and focus on family management strategies including monitoring and building skills for developing new kinds of family relationships. The initial work often involves a frank appraisal and airing of the despondency, pain, frustration, anger, embarrassment, and despair that is present.

Parallel Dynamics

Of the many parallel dynamics that a therapist is trying to manage, I would like to stress three that I feel are deserving of primary attention. These are important because therapists who are unaccustomed to working with adolescents may not be sure where to start and may experience the turmoil associated with adolescent life and development as a therapeutic obstacle rather than as a therapeutic window of opportunity.

  1. The Quality of the Therapeutic Alliance In establishing a therapeutic alliance, it is critical to find a stance that is neither too authoritarian (like a police officer or probation officer), nor too "pal-sy" (as in, "treat me like your friend", or, "I belong to your world").Instead, the therapist must negotiate a middle ground that will allow for appropriate advocacy. It is important to be a visible and practical advocate in the teen's life; by that I mean:
    1. Working with juvenile justice, going to court with the adolescent, standing in front of the judge and talking about how the treatment is progressing;
    2. Working directly with the school district to find the most appropriate setting;
    3. Sitting down with the parent(s) and the adolescent to begin to engender therapeutic dialogue;
    4. Visiting the teen in his/her environment. Understanding something about where this young person hangs out, where he/she lives, and the people with whom he/she associates. Or, helping the teen comply with his/her urinalysis regimen.

    The trust and reliability that is established through this type of advocacy--this type of "being there" for and with the adolescent--is one that will not prove to be as transient or capricious as that of the "friend" or as problematic and contentious as that of the "probation officer."

    Establishing the therapeutic alliance sets the stage to engage the adolescent in a way that will be more conducive to exploring change and changing.

  2. Windows on the Life of the AdolescentA key to effective therapy is to know which windows are open. In the above case study there are many open windows, or active issues that need attention. Some of these windows open to the outside world of the adolescent (i.e., her academic problems, her legal involvement, and her peer group).Other windows open into the inside world of the adolescent. For example, one might consider her relationship with her mother or boyfriend. However, the core issue here is her self-identity--who she is, what she wants, who she wants to be. Obviously, the existential distinction between inside and outside is blurred. Nevertheless, it is important that the therapist see the windows already open as well as those the teen opens as she moves through therapeutic change and not force windows open at inopportune moments because it is a therapist's prerogative or agenda.
  3. Engage the Adolescent - Find creative ways to meaningfully engage the adolescent. This means going where they go and understanding what makes sense to them.Another way of looking at this is the advent of play therapy for younger children. Play therapy was developed in an effort to engage children meaningfully in therapy. By the same token--and because we know that working with adolescents is not the same as working with adults--we must find ways to engage the adolescent in the therapeutic process. This is critical because of the adolescent's extrusion from supportive relationships and environments and entry into precarious relationships and dangerous settings.Although this can be a challenge for therapists, it remains a critical ingredient to the therapeutic alliance.So, in our case above: What are her interests? Where does she hang out? What healthy activities does she enjoy? At the same time, use the windows that are available to allow the therapeutic alliance to take on depth and breadth in concert with the complexity of the adolescent's life.Now, this brings us back to the issue of the therapist who feels "intimidated" by the prospect of treating adolescent substance abuse. Even in the case noted above, knowing where to start can be intimidating.Looking at a straight line, I can determine where it begins and ends. However, if I am looking at a circle, it is difficult to say for certain where it begins and where it ends. In the latter case, the therapist must look for, and start with, the windows that present themselves as opportunities to engage the adolescent in a meaningful way.Another issue to consider is the countertransference that therapists encounter when working with adolescents. The volatility of adolescent development complicated by substance abuse, social extrusion, disenfranchisement, and other problems can be quite challenging for any therapist. These issues can challenge the therapist's sense of competence. In order to manage this dynamic, therapists are called to a higher level of self-awareness and self-monitoring.

Athealth.com: How do you encourage therapists to work with parents, families, and/or guardians?

Dr. Liddle: There is no inoculation against adolescent drug use, but we now know a great deal about what puts a teenager at risk for developing drug problems and what kinds of things that can protect a teen from antisocial activities such as alcohol and drug use.

Relationships are critical in combating teenage drug use. The slogan of one of the more effective, science-based campaigns is Parents - The Anti-Drug. It captures an important message-the power of parents to influence the development of their kids throughout the teenage years. Drug use is not thought of as a moral failing but as a health, lifestyle, or mental health issue. Parents need to adopt a developmental perspective when trying to make sense of their teen's drug use.

Adolescence itself brings a new and dramatic stage of family life. Parents and teens are required to make changes in own lives and their relationships with each other. It is best if parents are proactive about the developmental challenges of this stage--particularly those that pertain to the possible use of alcohol and drugs. Parents should not be afraid to talk directly to their kids about drug use, even if the parents have had problems with drugs or alcohol themselves. The following are strategies that help parents prevent or address teen drug use:

  • Families matter. Realize that the parent-adolescent relationship is a critical ingredient in preventing and addressing teen drug use (even after drug use has begun).
  • Adopt a developmental perspective about drug use. Think about why kids do what they do. Teens say they use drugs for different reasons: relieve boredom, feel good, forget troubles, relax, take risks, ease pain, feel grown-up, demonstrate independence, belong to a particular group, look hip, etc.
  • Give clear no-use messages about smoking, drugs, and alcohol. Communicate your family values about this in direct and indirect ways.
  • Express love and concern as the basis of your expectations about no-use.
  • Help your teen address and deal with peer influence and pressure to use substances.
  • Get involved-become familiar with your teen's friends and their parents.
  • Talk to other parents, particularly parents of the teen's friends.
  • Supervise teen activities.
  • Encourage healthy activities. Help teens find alternatives to just hanging out. After school activities and sports protect against drug experimentation.
  • Increase awareness of and monitor the teen's whereabouts.
  • Take every opportunity to build relationships with the teen. Small talk isn't really small; it can sustain critical connections with a teenager.
  • Spend time with the teen. Family activities and dinners together are important.
  • Set a good example. Be honest about your own experiences with drugs and alcohol, but be firm in your insistence that no drug or alcohol use is allowed.
  • Notice the way you talk to your teen. Make your comments appropriate to the teenager's age. Resist the urge to threaten or badger. Above all, elicit and listen to what the teen has to say throughout the day and whenever you are in contact.
  • Seek resources and information from friends, school, church, social groups, or professionals.
  • Remember that even after drug use has begun, parents and families can still affect their teen's behavior and persuade them to stop using drugs.
  • Also remember that there are new treatments for adolescent drug problems that have been shown to be effective.

Athealth.com: Do you frequently encounter adolescents with co-occurring disorders? If so, what are the primary disorders that you see in conjunction with adolescent substance abuse?

Dr. Liddle: In fact, we do. Some studies demonstrate that up to 80% of adolescent substance abusers present with conduct disorders; over 30% present with anxiety disorders and ADHD; over 30% present with depression; and again, over 30% present with PTSD.

The main message for clinicians is that treatment of adolescent substance abuse disorders is complex. These rates of co-morbidity require that a therapist be knowledgeable about many things-drugs, depression, anxiety, trauma, family conflict, learning problems, developmental delays, and dysfunction of all sorts.

It also illustrates how difficult it is to disentangle and make sense of the clinical presentation of most teen substance abusers.

The third implication is in the area of clinical training. Many of us in the field are deeply concerned that clinicians are not being properly trained to treat adolescent substance abuse.

Athealth.com: Tell us a little about your work at the University of Miami. 

Dr. Liddle: We develop and test therapies for adolescent substance abuse. Our research has determined that a comprehensive, theory-based, family-oriented treatment can be devised, manualized, and taught to clinicians.

In this sense, therapists can be equipped with progressive treatment alternatives that demonstrate efficacy in treating serious adolescent drug abuse and mental health problems. Our studies show that the effects of this treatment, called multidimensional family therapy, are durable. We have followed kids and their families for one year after treatment ends, and results show that positive changes, including decreased drug use, an increase in school grades and involvement, and changes in the family's functioning, persist a year after treatment. Obviously, longer-term follow-ups are needed. Other kinds of services may be needed to maintain these changes, but we are very encouraged by the longitudinal results of these studies.

As these treatments have become refined and their scientific basis has increased, we have moved toward testing and transporting these therapies into non-research, clinical settings. Here, we address how to apply research-based treatments in regular clinical settings--as well as how to deal with the system and provider level challenges that arise in the adoption of manualized, evidence-based therapies.

One of our more exciting ventures is my work with the states of Connecticut and Vermont to bring family-based treatment into their substance abuse delivery systems. These locales are very committed to importing evidence-based treatment that will transform the practice delivery system.

Athealth.com: From your perspective as an expert in the field of adolescent substance abuse, what are the most important recommendations you would convey to a clinician who encounters an adolescent with substance abuse issues in their practice?

Dr. Liddle: First, there is the question of whether the therapist has been prepared to work with cases of this kind. Has the therapist been trained in adolescent development and dysfunction specifics? Has the therapist been trained in family therapy? Does the therapist know how to work with multiple systems of influence, such as schools and juvenile justice systems? And fundamentally, has the therapist been trained in adolescent drug abuse treatment?

Knowing about a teen's mental health problems or knowing how to do family therapy does not say anything about a therapist's capacity to treat adolescent drug problems.

Knowing how to take a comprehensive drug history, understanding how to do integrative therapy that addresses mental health and drug abuse, learning how to work with multiple systems and forces that need to be addressed and directly targeted in the treatment of adolescent drug use--this is a tall order for most therapists. Not insurmountable, but surely a tall order.

This is where training comes in. The field has to pay more attention to, and provide practitioners with, more opportunities for ongoing, in-depth training in these research-proven therapies. In addition, there are many good clinical articles and treatment manuals for working with teens with drug and behavior problems. There are also practice guidelines, Internet sites, and, of course, research studies that tell practitioners which therapies have the best evidence of efficacy.

Second, we need to acknowledge that the foundation of treatment is the therapeutic alliance with the teen and the parent. Our studies show that a therapist can do things to facilitate or make worse a working alliance with the teen or parent. It is important that the therapist know how to convince teens and parents of the basic proposition that there can be something in the therapy for the teen, individually, and for the parent as well.

Third, a multisystemic assessment is fundamental to drug abuse treatment with adolescents. Key questions include:

  • What is happening in the family?
  • Is the parent using drugs?
  • What is the family environment on a daily basis?
  • What is the emotional temperature in the house on a day-to-day basis?
  • Is the teen in school and how is she or he doing there?
  • Does the parent have any contact with the school?
  • Are there learning or behavior problems at school?
  • What developmental competencies does the teen have and which ones are absent?
  • What about his or her peer relationships?
  • How connected is he or she to a deviant peer culture or to antisocial ideals?

Athealth.com: What do you most enjoy about your work with teens?

Dr. Liddle: I enjoy the challenge of conducting progressive, meaningful research and advancing the clinical work being done to improve outcomes for adolescents through our clinical ideas, our treatment manuals, and our data.

It really is a challenge. The stakes are high for these kids. They generally have had problems for some time, and when we pick them up, they have moved pretty far along the trajectory of life problems. Their families are fed up, the social institutions have excluded or want to punish them, and only the deviant peer underworld wants them.

Our work, strange as it may sound, has an existential level. There are "meaning of life" dimensions to our therapy-we are engaging the kid and his or her family in a quest to determine what kind of life they want, what kind of future they want to have. Will his or her future be one that is filled with heartache brought on by addiction, job failure, relationship and psychological distress or one with a job that pays a decent wage, a family life that is supportive and nurturing, and personal relationships that can be fulfilling without drug use?

That's the real fun-when it all comes together. We formulate these theories, package them in interventions, and test them using good scientific methods. Then, we take great joy in watching some of the kids and their families not only change their drug use and abuse but also their lives at the most basic levels. I feel so fortunate to be able to do this kind of work.

Athealth.com: Thank you on behalf of our community of mental health practitioners. It has been a pleasure to speak with you today.

Learn more about Dr. Howard Liddle at Multidimensional Family Therapy (MDFT)

Reviewed by athealth on January 28, 2014