What is Psychosis?
‘Psychosis’ is an illness affecting the structures and chemicals of the brain that enable us to experience emotions, make judgments, and perceive the world around us. The three most common problems associated with this illness are hallucinations (seeing or hearing things that are not there), delusions (beliefs that are odd or untrue), and disorganization (becoming confused and fragmented when attempting to think or speak). Other symptoms include fearfulness, difficulty making decisions, strong sensitivity to light and noise, problems paying attention, and emotional distress.
Psychotic experiences are actually fairly common. About 10-25% of youth and young adults report having at least one such experience in their lifetime, but in most cases these are mild and do not last very long. For 1 out of 50 youths, these experiences become sufficiently intense, frequent or long-lasting and interfere with daily routines and well-being.
Problematic psychosis tends to appear between the ages of 12 to 25. These are the ages when youth grow from being dependent on adults to assuming responsibility for making life decisions, taking care of one self and, eventually, taking care of others. Supporting a young person with psychosis is particularly challenging because the illness sometimes requires that he or she be heavily dependent on family and friends. Meanwhile, the people providing the support have to balance that individual’s need for support with his and her developmental need for independence. Sometimes it can be hard to know what to do.
The importance of intervening early
When people go for annual physicals, the physician usually runs blood tests to check for early signs of illness. They do this because they know that making changes in diet and exercise in the earliest stages of diabetes or heart disease will do more good than waiting to take action when the person’s symptoms are causing problems. The saying that “an ounce of prevention is worth a pound of cure” applies to psychosis as well. The earlier a young person begins managing symptoms of psychosis, the more likely she is to eventually return to the level of activity (school, work, friends) she had before the illness began.
People who do not wait to get help when they see early signs of a developing problem manage their symptoms better in the long run. If you are concerned about changes in behavior (the things you can see) or changes in perception (the things that a youth reports to you), early psychosis is one possible explanation. Here is what to look for:
A teenager or young adult who…
· Hears or sees things that are not really there
· Believes things that do not make sense (like: “the
FBI is watching me”)
· Has difficulty organizing thoughts or words
· Has difficulty filtering out sights or sounds that are
in the background
· Has difficulty telling the difference between what is real or unreal.
· Suddenly struggles with school or work that used to be doable
· Feels uncomfortable around friends he or
she used to hang out with
· Makes big changes in how he or she dresses, bathes, or grooms
· Loses interest in things he or she used to do with
friends (e.g., movies, sports, shopping)
· Picks up new, perhaps unusual interests that he or she does alone
Having signs of psychosis is not the same thing as having psychosis. A young woman who suddenly struggles in college may be depressed or simply need glasses to correct a vision problem. Psychosis is one possible explanation. An assessment will be necessary to find out if early psychosis is the likely explanation for the changes being experienced. The assessment should be conducted by a professional, such as a psychiatrist, psychologist, nurse practitioner, social worker or counselor. Most importantly, it should be conducted by a professional that is experienced and well-trained to evaluate youth and young adults for serious mental illness.
You Are Not Alone
When asked what is hardest for families dealing with a member that has psychosis, the answer is not always about the illness itself, but sometimes how other people react to the illness. If you have a family that pulls together when problems arise or live in a community that gives help when needed, know that you are deserving of that support and should access it. If you do not have family or neighbors who are willing or able to lend an ear or a hand, remember that there are more than 13 million adults and about 2 million children living with serious mental illness. Among them are parents, like the ones below that have chosen to share their stories.
Susan Inman is a 65 year old mother of two and former educator who taught English and Drama to middle and high school students for over 20 years. Her daughter, Molly, had her first serious experience with psychosis when she was 15 years old. In Molly’s case, symptoms escalated quickly and seemed to rise and fall with her mood. Antidepressant medication was prescribed to help stabilize Molly’s mood. Her mood improved but the hallucinations and delusions continued to worsen. These symptoms were eventually brought under control by finding the right medicine and dose so that Molly could think clearly enough to educate herself about psychosis and put words and meaning to the experiences that she had been having.
When asked what her greatest challenges were in the early years of her daughter’s illness, Susan would point to the difficulty of setting up an educational plan that would let Molly work at her own pace while keeping her on track for graduation. After much trial and error, Susan hit on the solution of enrolling her daughter part-time in a community college program that was willing to accommodate her needs. Another big challenge was to remain hopeful. Molly’s first team of psychiatrists classified her as one of the worst cases ever admitted to their hospital, and even prepared the family for the possibility of lifelong institutionalization.
Today, Molly is an advocate and spokesperson for people with serious mental illness and encourages others to speak openly about their experiences with family and those who can help. Molly has not only continued her studies, but has become an avid sportsman who loves to ski, snowboard, golf, and play tennis with her boyfriend. Her favorite indoor destinations include movie theatres and concert halls.
To find more on Susan and Molly’s success story, go to http://www.healthyplace.com/blogs/tvshowblog/psychosis-and-saving-my-daughters-sanity/
Stephanie Escamilla is originally from Uvalide, Texas and moved to San Antonio in 2010. At that time, she was a single mom with 2 sons. Her eldest, whose identity she protects under the pseudonym “Daniel”, was diagnosed at age 6 with ADHD and at age 14 with bipolar disorder with psychotic features. This began what Stephanie referred to as a “roller coaster ride” for her and her second husband who struggled to find treatment that would prevent the frequent hospitalizations that Daniel needed to manage his mood swings and hallucinations. Importantly, educating themselves about bipolar and psychosis proved to be an important first step in coming to grips with the boy’s illness. Stephanie read every book that she could get her hands on, and her partner said that learning about Daniel’s condition made it easier to be there for his step-son. Understanding what Daniel was going through proved to be especially important for Stephanie’s family, who mistakenly shunned her as a bad mother, but eventually came to respect and support her commitment to her son. Stephanie’s greatest gift to Daniel was showing him that it was safe to tell her when he was seeing visions or hearing voices. Gradually the family was able to anticipate when symptoms were worsening and fend off prolonged episodes with relaxation, comfort and medicine. At the time of this writing (2015), Daniel is a 16 year-old who no longer has hallucinations, can effectively cope with mood swings, still takes some medication, and only needs to see a therapist once a month.
Stephanie’s message to parents is threefold:
1. You are definitely not alone,
2. Never lose hope,
3. Take care of yourself too.
Today, Stephanie is an active member of the San Antonio chapter of the National Association for Mental Illness (NAMI: www.nami.org) where she serves as an advocate to other parents who have children with serious mental illness. Her family’s story was the subject of a 2013 CNN exposé and can be found at: http://www.cnn.com/interactive/2013/12/health/mentally-ill-son/.
Dealing with Severe Symptoms
Tips for parents when symptoms are severe
As the parents above can attest, it can difficult and sometimes impossible to know the exact right thing to do when symptoms of psychosis cause young people distress. Generally speaking, the best approach is to keep the person safe, acknowledge the distress and let him know that he is supported. Other family members should be discouraged from trying to argue the person out of her delusions or convince him that his hallucinations are unreal. A short list of do’s or don’ts can help to keep everyone stay on track when symptoms temporarily escalate. The acronym SAND can remind you of the following 4 basic tips:
STAY CALM. If parents can remain calm when their children are upset, children tend to have an easier time calming down. This fundamental principle of parenting applies to children when they are young and even when they are older. The same principle can be applied to parents who want to help a child distressed by acute symptoms of psychosis. Before taking immediate steps to deescalate, parents are encouraged to check in with their own stress level, take deep breaths and try to calm themselves first. Young adults in recovery from a history of psychosis often recall being helped most by people who were able stay grounded and calm when symptoms were bad. Of course, remaining calm when your child is distressed can be challenging. Know your limits, take breaks when possible, and get support when you need it. When you take good care of yourself, you will take better care of others.
AVOID ARGUMENTS. When we say that someone has mild to moderate symptoms of psychosis, we mean that the person is experiencing symptoms (e.g., hearing sounds that are not there) while continuing to recognize that these experiences are not real. When we say that someone’s symptoms are severe, we mean that the person is temporarily convinced that these experiences are, or may be, real. This does not mean that the person’s personality or world view has fundamentally changed. It means instead that temporary changes in the brain’s chemistry are interfering with that person’s ability to reason or distinguish what is real from what is unreal. Family members should never try to argue a person back to health when symptoms of psychosis are severe. Reason and insight will eventually return when the person’s symptoms settle back down. The better course of action when symptoms are severe is to focus the person away from topics that trouble them, engage that person in pleasant activities, or move to a room with less stimulation.
NEITHER CHALLENGE NOR PLAY ALONG. While it is mostly unproductive to challenge the veracity of hallucinations or delusions (e.g., “I do not see it.”), it is equally unhelpful to play along and confirm that these visions, voices, or beliefs are real (e.g., “I see it too.”). Confronting the person with psychosis tends to be unhelpful and usually leads to more upset and confusion. Playing along is also unhelpful, tends to reinforce symptoms, and runs the risk of convincing that person to take actions that may be dangerous. So what options do you have? One approach is to acknowledge the reality of the person’s distress (e.g., “I can see how upset you are.”) and take attention away from symptoms altogether. Connecting with the person on an emotional level allows you to be helpful without getting bogged down in questions about what that person actually sees, hears, or believes.
DO NOT TAKE IT PERSONALLY. A child distressed by symptoms of psychosis may, on occasion, make unkind remarks or accuse the very people trying to help her. It is impossible not to feel some anger, surprise or hurt when such statements catch us by surprise, but it is important not to prolong our gut reactions by taking what is said personally. To keep perspective, we can remind ourselves that a person with severe symptoms of psychosis is no longer responding to the real us, but they are responding to a false perception of us that is caused by temporary changes in their brain chemistry. It may also help to remember that these unkind remarks will eventually pass as the person recovers, especially if the comments were uncharacteristic of the person before the illness. Of course, deflecting unkind words can be challenging in the moment. Once again, know your limits and give yourself space when needed. Managing someone with severe symptoms is taxing, so do not be shy about reaching out for any support you can get. You deserve it. And a final note: tolerating misguided criticisms and accusations does not mean condoning personal threats or verbal attacks. It is still appropriate to set limits on aggressive behavior. Safety is always first.
Frequently Asked Questions
Frequently asked questions from other parents
What can I expect for my child’s future?
No one can say precisely how an individual’s symptoms are going to develop over time. Part of the problem is that while researchers suspect risk factors for psychosis (certain genes, genetic mutations, prenatal and perinatal events, and human behaviors such as heavy teenage marijuana use), we still do not know what exactly causes psychosis and therefore cannot predict what will happen in the future. The good news is that there are some things that individuals and families can do to modify their way of life that will reduce the likelihood that symptoms will occur or reoccur. In the end, it is more productive to focus on what one can do to feel better and stronger than to try and predict what exactly will happen.
Is this going to get worse?
Once again, no one is yet able to say with certainty that your child’s symptoms are going to improve, worsen, or remain unchanged. However, clinical researchers can say with confidence that you can improve the probability of a better future if you engage in treatment that educates your family about psychosis and provides counseling to help you come to terms, manage symptoms, promote recovery, and plan for the future. Treatment should also offer the option of a psychiatric referral and medication if needed. If the young person, her family and the doctor agree that medication is worth trying, it should be taken consistently and as prescribed so that main effects and side effects can be documented for follow-up med checks.
The earlier you begin treatment, the more swift your child’s recovery is likely to be. Once you are in treatment, attend consistently, be patient, and remember that each individual is unique and will improve their functioning at the rate that their body allows them.
What do I say to relatives? Neighbors?
Mental illness is a sensitive topic, but keep in mind that you are under no obligation to share all or any details about your child’s mental health with any family members or neighbors if you do not feel comfortable doing so. If you are considering telling someone who is currently unaware of your child’s issues, it can be wise to first test the waters by discussing, for example, a recently read news article on mental illness. This indirect approach gives you an opportunity to gauge someone attitudes towards people with mental illness or public stigma about mental illness. By selectively sharing the challenges you face with others, you and your child stand to benefit from the support of people who understand you, are open to learning more, and have you and your family’s best interest at heart.
Will my child be able to get and keep a job?
Most employed young people who are at risk for developing psychosis or have recently recovered from their first hospitalization continue to work and have plans to continue working in the future. In a recent study of youth ages 12-25 who were in treatment for signs of early psychosis, more than 4 out of 5 were in school or working jobs. Studies that track these young people over time find that those who stay employed tend to manage their symptoms more successfully and stay socially connected to people outside their families. There is a growing consensus that having meaningful work in one’s life is not just a byproduct of recovery, it is an integral part of it. Employment provides a structure and a setting in where people can connect. It is critical that youth know that they have certain rights in the workplace under the Americans with Disabilities Act. To exercise those rights, it helps to link up with a counselor with expertise in supported employment who can help the youth adjust to the realities of the workplace and seek accommodations from employers when needed.
What treatment options are there for my child? Will my child have to take medicine?
The good news here is that there are more effective options for the treatment of psychosis than existed 10 years ago. One treatment approach, called the PIER model, is designed for youth and young adults and combines several of these effective treatment options into a single intervention. Basic elements of the intervention include: family engagement, education about psychosis (i.e., information about psychosis), group counseling, and consultation to assist with plans for education and employment. When needed, other therapies can be added to these basic elements including: testing to evaluate aptitude and functional readiness, occupational therapy, or substance abuse counseling. While not everyone needs or wants medication, psychiatric support remains in the PIER model as an option for reducing acute symptoms like hallucinations (i.e., sensing things that are not there), elevating mood, or improving motivation. In the PIER model, prescribed medications are frequently reviewed for main effects and side-effects. Moreover, medicine is always looked upon as one single part of an overall strategy and never a standalone treatment.
Is my child likely to be hospitalized or re-hospitalized?
Most people with mental illnesses do not need hospitalization, but it is important to keep in mind the reasons that it may be necessary. Reasons for hospitalization include thoughts of hurting oneself or others, the need to adjust medications for greater stability, or a temporary worsening of symptoms.
As a parent, there are 4 steps you can take to help reduce the possibility that your child will need to be hospitalized in the future. First, do not wait until symptoms become disruptive to get your child assessed for mental health problems. Assess early so that you can address problems before they become big problems. Second, engage your child and any other family members that are being affected by the illness with appropriate treatment that combines visits to the doctor with opportunities for individual, family, or group counseling. Third, attend treatment consistently and over a prolonged period of time. A year is considered a reasonable period of time in which to get information about the illness, give your child time to recover, learn how to track symptoms, implement stress management skills at home, and consolidate plans for education or employment. Fourth, if medicine is prescribed by your child’s doctor, encourage your child to take it consistently and as prescribed. Document any results and side effects so that you can report back to your physician at follow-up visits.
Does insurance cover this?
The treatment program featured in this website (Delaware CORE, Community Outreach, Referral and Early Intervention) is a federally funded program, and is available to the general public at no cost. If your child qualifies for CORE, neither you nor your insurance will be billed. If your child does not qualify for CORE, you and your child will be referred for treatment to another provider. Any fees you incur from attending another treatment program will depend on the type of insurance coverage you and your family have. If you are referred to a program other than CORE, we recommend that you contact your insurance provider to inquire about costs associated with mental or behavioral health treatment for your child.
Will my child be able to continue attending the same school? What should I tell my child’s school?
Because the onset of severe mental illness often occurs during late adolescence and early adulthood, it is not unexpected that a mental illness may interfere with your child’s education. You may notice a change in your child’s ability to concentrate, as well as a change in their socialization patterns, moods, and/or behaviors, all of which influence a child’s academic performance. However, keeping educational goals in the forefront of our minds is of great value. Continuing to pursue one’s education has many positive effects on one’s recovery from mental illness, including: improved self-esteem, a feeling of being productive, opportunities to socialize, and renewed faith in one’s ability to achieve future goals and find employment.
There are several options for continuing academic learning during any stage of your child’s recovery. However, making the right decision can be intimidating, and it is worth the time spent to find someone that has expertise in supportive education.
In some cases, you may consider looking into educational accommodations at your child’s current school, which requires communication with your child’s teachers, academic advisor, and/or guidance counselors. Some teachers are more accommodating than others, so reaching out to the counseling services at the school for support is wise. Also, if you feel a greater accommodation is necessary, you may decide to look into special education or alternative schools, or getting a GED or high school equivalency. By law, primary and secondary schools are required to provide free and appropriate education for all students.
Seeking accommodations from a college or university is more complicated and subject to the policies of a particular learning institution. Common examples of accommodations made to help students succeed include: more time to complete tests and assignments, having a student aide to assist with taking notes, or a reduced course load. Every school has its own policies for academic adjustment. These can usually be found by either going to the school’s website or contacting an admissions counselor.
You may need a document from a doctor or counselor proving your child’s need for accommodation. If you feel that your child is being discriminated against, follow the school’s reporting and grievance procedure. There should be staff assigned to ensure compliance with the laws and policies pertaining to disability and education.