FAQ: Childhood-onset Schizophrenia

The following are questions commonly posted on our discussion boards, along with answers and advice from responding members. In many cases, member answers have been expanded on from other sources, and relevant links have been added for more information. These answers are meant only as a helpful guide and a resource for further information; each individual situation is unique and may need a tailored solution. Your treating psychiatrist is always a good person to ask when you have specific questions pertaining to your own case.

If you don't find what you're looking for here, please visit the Childhood Schizophrenia Discussion Board (see the righthand menu column on the homepage ) and post your question. Our members are usually very generous with their advice and support.

Index of Questions:

What is childhood-onset schizophrenia? How is it different from adult schizophrenia?
How can I tell if my child is developing early-onset schizophrenia? How early can it be identified?
How do I respond to my child's symptoms (particularly hallucinations)?
The Next Steps: What if my child needs an evaluation or treatment?
Received a Diagnosis - now what?
Prescription Medications - what to expect
What antipsychotic medications are there? What do they do? What are the side effects?
How will medication help? How will I know if it's working?
Are there any other treatments besides medication?
How can I help my child understand his/her condition?
How do I explain the illness to my other children? How can I help them cope with their brother/sister's condition?
How can I plan for my child's financial needs, now and in the future?
What can I do if my child is having problems at school (social or otherwise)?
For Teens: Who you can talk to, where you can get help

What is childhood-onset schizophrenia? How is it different from adult schizophrenia?

Schizophrenia affects children much less frequently than it does adults; about 1 in every 40,000 children is diagnosed, as opposed to 1 in every 100 adults. In general, the earlier a diagnosis is made, the more severe the disorder tends to be. Managing schizophrenia in children can also be more difficult, although there are many new antipsychotic medications that are proving to be helpful. The official symptoms are the same as those for adult schizophrenia (see Childhood-Onset Schizophrenia: Diagnosis). The symptoms in children can overlap quite a bit with the common symptoms to pediatric bi-polar disorder, autism, or Asperger's syndrome.

For more general information, see the childhood-onset page,, the NMHA childhood-onset factsheet, or a formal write-up of Early Onset Psychosis (separate write-ups for autism, schizophrenia, and schizoaffective disorder).

How can I tell if my child is developing early-onset schizophrenia? How early can it be identified?

Although very young children can start showing signs of schizophrenia, it's extremely rare to get an official diagnosis before the age of 5. Because there is so much symptom overlap in pediatric psychiatric disorders, doctors may hold off on giving an official diagnosis or may change diagnoses several times as the child ages. There are signs and symptoms that a parent can watch for; however, it's important to keep the whole picture in mind. 99% of children who exhibit some worrisome behaviors (night terrors, excessive anxiety, mood swings, etc) will turn out to be completely normal. The following are not meant to diagnose a child, only to be taken into account if you're concerned or wondering whether to have your child evaluated. Another thing to take into account is whether schizophrenia (or another psychiatric disorder) runs in your family.

Signs commonly seen in children later diagnosed with schizophrenia (by age category): (Note: These are NOT unique indicators of schizophrenia, and are very often seen in normal children as well. Consider your own child's entire history before becoming concerned).

Infants: trouble eating or sleeping, poor muscle tone (also known as hypotonia or 'floppy baby' syndrome - such a baby lies very flat, with arms and legs completely relaxed), fear of quickly moving objects, inactivity.

Toddlers: wandering alone at night while parents are sleeping, poor/slumping posture or "leaning" behavior (always leaning against something), short-attention span that is mentioned by teachers or caregivers, always has a "worried" or "distracted" expresion, overly fearful/anxious about new things (this is also a normal child development phase, the difference is usually the severity of the fear) - common pre-schizophrenia fears can include fear of hair cuts; fear of the dark; fear of labels on clothing; fear of things that move, a tendency to move or play with toys in a repetitive (rather than imaginative) manner, a history of high fevers between the ages of 2 and 5.

5-6 years old and older: May start having hallucinations even at this early age - common auditory hallucinations are noises that sound like bangs, clangs, explosions, or loud scrapes, crashes like door slamming, or whispers, while common visual hallucinations can look like dark streaks or wiggles (sometimes interpreted as snakes), rolling balls, or streaks of light on a dark background. Very inner-directed; may talk, smile, or giggle at nothing. The child may put his hands over his ears at random times, or may comment things like "there's a girl/boy in my head saying..." or "everybody's saying...."

Parents may wonder how to distinguish between schizophrenia and pediatric bi-polar disorder - the common distinction is that bipolar kids have a distinct mood component to their illness, and may explode based on emotional triggers like being told "no". Children with schizophrenia, on the other hand, are more likely to have an explosion or a melt-down because of sensory-overload or frustration. To someone watching, these tantrums will seem to be "out of the blue," unrelated to anything around them.

Other resources with information on childhood schizophrenia, diagnostic symptoms, risk factors, and things to watch for: (Two sites are specifically about bi-polar disorder, but much of the information is still relevant since there is so much overlap between the two illnesses in children).

--Is my child at risk for developing Schizophrenia?
--Recommended books about child psychiatric disorders
--Risk factors for developing schizophrenia, and prevention suggestions
--Child and Adolescent Bipolar Foundation
--The Bipolar Child

Highly Recommended Books:

1. Childhood Schizophrenia by Sheila Cantor.
2. The Bipolar Child by Dr. Dimitri Papolos.

Helpful online audio/video files:

1. Children and Mental Health (Voices in the Family public radio program)
2. Mental Health of Children, Parts I and II (Voices in the Family public radio program)
3. Early Detection and Intervention in Schizophrenia (UCLA Grand Rounds)

How do I respond to my child's symptoms (particularly hallucinations)?

Any parent would be shocked and frightened if their child started talking about things that no one else could see or hear. However, keep in mind that you want your child to be open with you about these experiences, so that you can help them control their symptoms. A child that is told "those things don't exist" or "that doesn't happen" with no opportunity for more discussion may just stop telling people about what they see.

Try to respond in a way that leaves the door open for more communication. For example, if your child tells you about things they see or hear that aren't there, try saying "I'm sorry that happened to you - tell me what you see, and how you feel about it." This acknowledges their experience as "real" (to the child, it's very real) and something that happened to them, without giving a false confirmation that other people can also see these things.

A child with a mental illness can have quite a hard time communicating about anything. Encourage and reward any communication they offer about their symptoms.

Another thing that parents with mentally ill children have to deal with a lot is an excess of meltdowns or temper tantrums. Theirs is a more difficult situation than the average parent, because: 1) the tantrums may or may not have an obvious trigger, and 2) children (for that matter, anybody) with psychiatric disorders tend to be hyper-sensitive to correction or criticism. Parents can think of these children sometimes as kids with distractions; the sensory areas in their brains are getting overloaded, and it's overwhelming them. A quiet, low-stress environment with a minimum of stimulation is helpful. A simple daily routine can help keep children focused on one thing at a time, and keep them from getting overwhelmed. And, as one parent put it, "Reassurance, love...those do a lot too."

The Next Steps: What if my child needs an evaluation or treatment?

The first step, once you've determined your child's symptoms are severe enough to be worrisome, is to make a doctor's appointment. You can start with a regular pediatrician appointment, because generally it's standard to rule out a host of other disorders before you are referred to a psychiatrist. The pediatrician should give your child a full check-up; in addition, you may want to get an EEG or MRI to rule out seizure disorders, and some lab tests to determine pituitary and thyroid function.

Before the first appointment, prepare some materials to discuss with the doctor. Keep a journal of symptoms and behaviors that you want to discuss (see The Importance of Keeping a Diary on Schizophrenia). Make a list of questions that you want answered. "Choosing the Right Mental Health Therapist" (provided by the United Advocates for Children of California) has an easy-to-follow procedure list for appointments, as well as some suggestions for questions you might ask.

Received a Diagnosis - now what?

Whatever diagnosis your child is given, whether it is schizophrenia or something else, know that there are many many parents out there with the same questions, concerns, and problems that you face. There is a wealth of information and support available to you. Here are some things to try first:

1. Educate yourself and your family (and of course, your child) as much as you can about the illness, the treatments, and long-term prospects. Greater understanding can help alleviate fears and can make communication, treatment programs, and day-to-day coping much easier. See Recommended Books for a list of helpful, reviewed reading material.
2. Build a support network as soon as you can of other families with similar experiences. The discussion boards at are a good place to start, but a local support group can be a long term source of relief and resource for you during difficult times. The National Alliance for the Mentally Ill has local chapters in every U.S. state - visit their website and find one near you. Also, consider taking a Family-to-Family class (also through NAMI), a free 12-week education course designed for (and taught by) family caregivers of children with severe mental illnesses. This class is highly recommended by many parents on See the Family-to-Family website for more program information and class schedules

Treatment options and questions:

Prescription Medications - what to expect:

After your child is officially diagnosed, he/she will almost certainly be started on a prescription psychiatric medication (for schizophrenia, it will be a form of antipsychotic or neuroleptic). Medication can greatly decrease symptoms and help a person return to a functional level; however, every case is unique, and medications are not perfect. It will likely take a long, frustrating trial-and-error process before you and the doctors find a treatment regiment that works best for your child.

When a psychiatrist prescribes any medication, ask what symptoms it primarily treats, what the common side effects are, what dosage he/she is prescribing, and how long it will take to start working. Keep track of every medication (and at what dosage) your child is on: how he/she reacts, what side effects it causes, which symptoms get better and which get worse. A journal (the same journal where you write down your child's symptoms and behaviors) is an excellent place to do this.

Don't be surprised if the doctor keeps switching medications, or adjusting dosages. They are not experimenting with your child; trial-and-error is the only way to eventually find a combination that works. Medications are never sure-fire: a medication can work for awhile and then stop working, or one that you tried previously may work at some point in the future. You can help this process with feedback about the different medications (see paragraph above).

What antipsychotic medications are there? What do they do? What are the side effects?

See the Medications section of for a complete list of 1st and 2nd generation antipsychotics, their mechanism of action in the body, and their common side effects. Another helpful resources is "Your Child and Medication" (from the United Advocates for Children of California).

See also an online UCLA grand rounds presentation - Antipsychotics in Special Populations: Pediatrics and Adolescents.

How will medication help? How will I know if it's working?

An antipsychotic medication can take weeks or even months to start working at full strength, so be patient and keep recording things in your journal. Once you find a medication that seems to work, the voices/hallucinations that your child experiences may gradually fade away and disappear - or they may not. Sometimes these voices quiet down to a point where they are not harmful or debilitating, and many people with schizophrenia make a decision at this point that living with these quieter voices in the background is preferable to going through the pain of more medication and more side-effects. This is a choice that your child will eventually make for him/herself.

Are there any other treatments besides medication?

Right now, antipsychotics are the best tool we have to control the symptoms of schizophrenia. However, they are far from the only treatment option. Many patients and their families choose supplemental therapies (these can include psychosocial or cognitive therapy, rehabilitation day programs, peer support groups, nutritional supplements, etc). In the case of therapy, some research has shown that psychotherapy and medication can be more effective than medication alone (however, the same study noted that psycotherapy alone was NOT a substitute for medication). For some supplementary treatments options (as well as "alternative therapies" that have been disproved), see Other Treatments on the homepage. Ask your child's psychiatrist before starting any treatment in conjunction with medication.

How can I help my child understand his/her condition?

Before you can talk openly with your child and address his/her questions and fears, you need to have a good understanding yourself of what schizophrenia is, how it is treated, and how it affects children. A gold-standard reference for any family (recommended by just about everyone on is Surviving Schizophrenia by Dr. E. Fuller Torrey. Many other recommended books and educational resources are available at Your local NAMI chapter, mental health center, or hospital is also a good resource for information.

What, and when, you tell your child should be based on his/her maturity, stability, and ability to understand. Answer any questions they have honestly, and never avoid the subject. Some parents followed their children's lead, and waited until they were old enough to start asking questions or looking for information themselves. One parent says she talks about her son's schizophrenia diagnosis that way she talks to her kids about sex: in language they will understand, not too much too early, and in positive (hopeful) language.

There are a few books about mental illness that are written specifically for children. Many of these are unfortunately out of print, but you may be able to find them at the library, at a used bookstore, or by contacting the publisher directly. Two books that you can order directly from websites are Catch a Falling Star (An illustrated book about a boy who develops a mental illness and learns coping skills from a friendly dragon) and Edward the Crazy Man (a book that deals with schizophrenia and homelessness). See also other books for children at

How do I explain the illness to my other children? How can I help them cope with their brother/sister's condition?

To some extent, you can use the same guidelines that you used in talking to your child with schizophrenia. However, siblings will naturally have different feelings and issues (ranging from curiousity, to embarrassment, to fear and guilt) that you will need to address. Be as open with them as is age-appropriate, and answer their questions honestly. Schizophrenia is a disease that currently has no cure and will not go away, so pretending it is something else or doesn't exist is ultimately pointless and harmful for everyone involved.

It's important to keep siblings, especially as they get older, informed about the disease progression, treatment plans, and long-term care options. Not only are they a source of love and support for their brother or sister, they may eventually be a primary caretaker someday, depending on how severe the illness is. Talk with them about what this might involve; if they cannot take on the responsibility, you can make other arrangements ahead of time.

When your other children are old enough, explain that schizophrenia is partly a genetic disorder, and talk with them about the possibilities of inheritance and the risks if they have children of their own someday. If it will help, make an appointment with a genetic counselor to discuss these issues. See Heredity and Genetics of Schizophrenia for family risks.

An excellent publication, sponsored by the Sibling Support Project, has points that siblings of special needs kids would especially like their parents to know.

See also the Brother and Sister FAQ guide, which addresses special issues related to siblings.

How can I plan for my child's financial needs, now and in the future?

Some people with schizophrenia are able to control their symptoms adequately with medication, and eventually live independently, manage their own treatment plans, and hold down part-time jobs. For others, this is simply impossible. After your child gets older and has been in treatment for awhile, you will need to ask some hard questions about what their functional level is, and if they will need long-term care or a guardian as an adult.

There are some things you can do in the meantime to make the eventual transition easier, and feel more secure about the future:

1. Work out custody and guardianship policies with close relations or friends. Keep a notarized copy for yourself, and give other copies to the future guardian, the hospital that administers care, the child's psychiatrist, your attorney, and any other relevant party.

2. Take out a life insurance policy

3. Set up a bank account in your name that is officially designated for your child; when you die, that money is turned over to the legal guardian acting on the child's behalf, not the child.

4. Consider setting up a trust with an insurance company or bank.

5. A handicapped child under age 18 may receive Supplemental Security Income (a form of social security). if the child and parent meet income and resource requirements. Those eligible for SSI may also be eligible for benefits such as housing programs, Medicaid, vocational rehabilitation, and food stamps. Children living at home (in some states) can apply for an extra benefit under "living arrangements", which is meant to offset some of the costs of providing extra attention and care to a special-needs child living at home. NOTE: Many people are denied on their first application, but are later accepted through an appeals process. See the Social Security Association website or for details.

See the General FAQ guide for more information on this topic (including planning for housing and financial matters), or books about planning for your child's future.

What can I do if my child is having problems at school (social or otherwise)?

The negative symptoms of schizophrenia include an inablitiy to concentrate, disorganized thinking or behavior, emotional withdrawal, inability to read social cues, and excessive fatigue. All of these can have adverse effects on a child's ability to learn and grow at school. Even if the positive (psychotic) symptoms are well controlled by medication, your child might need extra help and support from their school system, or a completely different educational program.

Here are some things parents should expect from any child with a psychiatric disorder at school:

  • Expect the child to miss a lot of school, due to medication issues, allergies, the illness itself, or a combination of factors. Moreover, these children don't tend to have normal amounts of stamina, and may get sick more often.
  • If the child is under a lot of pressure or stress at school, this can lead to relapses or hospitalization.
  • The child's attention, energy, and abilities will tend to wax and wane in cycles. Parents of suggest that if a child seems to be having an "off day," sympathy and encouragement will make much more of a difference than forcing the child to "shape up."
  • Grades that focus on what the child does, rather than does not, do will be the most helpful (whereas the other kind might be destructive, since kids with schizophrenia can be very sensitive to any form of criticism).
  • Medications might make your child less tolerant of heat and sunshine.
  • The noise and bustle of a normal school day might easily get overwhelming, and the child needs a refuge
  • If a psychotic episode or a breakdown occurs at school, the best thing to do is stay absolutely calm, speak softly, and make yourself available to what the child seems to need at that moment. Do not try and talk them out of it, point out they are being ridiculous, or berate them for their behavior. Don't try and touch or hold them unless the child seems to want it. You will eventually learn the best way to deal with your child's behavior, and this is useful info to share with teachers and other school administrators as well

With the above in mind, many parents have chosen to put their children in a special needs or Individual Education Program. Some of these kids have expressed relief at being put in a school with others "like them." Special programs also put a large emphasis on developing and nurturing social skills, which the child can then practice in after-school settings and extracurricular activities. Other parents have opted to homeschool their children, as the stimulation and stress of a mainstream school was completely overwhelming and made symptoms worse. These parents found it much easier for everyone to keep themselves in the role of mentor/supporter/caregiver rather than teacher, and so contracted qualified homebound teachers through the school district

There are also options and accommodations available within the mainstream public school systems as well. A doctor or psychiatrist can recommend evaluation testing to get your child assigned a special-education status. You can then work with the school system, health professionals, and educational advocates to find an individualized program tailored to your child's needs. Some options include partial-days, a smaller class size, or homeschooling with weekly teacher meetings. parent suggestions for helping a child with schizophrenia at school:

1) Help your child's teachers and other school administrators understand the illness by providing them with plenty of reading material ahead of time. Books that have helped in the past include: "Teaching the Tiger - A Handbook for Individuals Involved in the Education of Students With Attention Deficit Disorders, Tourette Syndrome, or Obsessive-Compulsive Disorder (Marilyn P Dornbush and Sheryl K Pruitt); "Children with Schizophrenia" (spiral-bound easy to read reference book - order from Education Services Room 0601, Glenrose Rehabilitation Hospital, 10230-111 Avenue, Edmonton Alberta, T5G 0B7. Cost is $12 canadian dollars + $5 for shipping).

2) Help your child form a supportive relationship with the school nurse or counselor - their private offices can be a refuge during the day. One parent's daughter made a deal wtih the school counselor that she could run to her office any time she needed a quiet place, without the teacher's permission. This gave her a safe place at school, and a means of avoiding a potential meltdown or blow-up.

Resources to help you plan your child's education: - information about laws and advocacy for specil needs and disability education. - know your rights and your child's rights under the Individuals with Disabilities Education Act.

See a sample Individual Education Program, which can be used as a model and adjusted for your child's needs

For Teens: Who you can talk to, where you can get help

Lots of pre-teens and teenagers are understandably afraid to tell anyone, even their parents or best friends, about the odd or scary things they've been experiencing. For that matter, a lot of adults are afraid to tell anyone also. You'll find that while some people won't understand, many more people will be supportive and helpful to you.

Having a psychiatric illness is just like having diabetes - something has gone wrong in your body that you have no control over, and you need to find out what it is so you can get treatment and help yourself feel better. No one tells people with diabetes that they're to blame for their illness, or that they're weak for taking insulin every day. By getting yourself treatment, you are taking responsibility for your own health like any mature adult.

Believe it or not, parents are pretty observant about their kids. That's their job. They've probably already noticed that something's been on your mind or been bothering you lately. Don't be afraid to answer honestly when they ask how you're doing. Tell them that your experiencing some symptoms, and you need a doctor's help to figure out what's going on and how you can deal with the situation. There is no reason to think that the symptoms will just go away if you ignore them, and every reason to think that they will continue to get worse. Be serious and insistent - if you take yourself and your health seriously, your parents will too.

If you can't find the words to tell them, try looking for information in books, or personal stories on the internet that sound like what you're going through. Share what you find with your parents to help them understand.

If you absolutely can't tell your family, find someone else that you trust - a school counselor or nurse, a clergy member, a friend or a friend's parent. Ask them to help you make a doctor's appointment.

If all else fails, try getting advice from a helpline or support organization. You can call NAMI's Information and Referral line at 1800-950-NAMI, describe your symptoms and feelings, and get advice on what to do next.




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