Advice for Parents of Children with Behavioral and Psychiatric Disorders

From The Quarterly, Winter 2015

Since 1984, Foundation Scientific Council member Judith L. Rapoport, M.D., has been Chief of the Child Psychiatry Branch at the National Institute of Mental Health. We asked her what advice she could offer parents and siblings of children affected by behavioral and mental health disorders. Our conversation ranged widely and included discussion of attention-deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), learning disorders, anxiety, phobias, depression, and the fallout from divorce. Dr. Rapoport also addressed ways to help children with autism, bipolar disorder, and schizophrenia.

If a child appears to be having a psychological or behavioral problem, what course of action should a conscientious parent take?

There’s an important rule of thumb: there is no “disorder” until a problem begins to significantly interfere with a child’s quality of life. Children have all sorts of experiences that can worry a parent. For example, they might be in the back seat during a car accident and may now be fearful of getting into a car. That’s normal, and the way you handle it is to have them get back in the car—that is, don’t accommodate their fear. Or, many children feel sad, but for good reason, such as when they lose a pet. But when fear or sadness or an inability to concentrate takes over and starts to interfere with the child’s life, either at home or at school, that’s when you should take action.

Where, and to whom, should a parent turn for help?

A good place to start is the nearest medical school or teaching hospital, even if it’s a considerable drive from home. You want to ask who at the school or hospital, or within its department of psychiatry, sees children. Find out who in particular specializes in the kind of problem your child may be facing. Once you are presented with the name of a doctor or therapist, it’s smart to ask how much experience that person has had with other children like yours, and what approaches to treatment he or she might take. Often, you’ll find therapists who can offer several different approaches, who will want to match the approach to the specifics of your child’s case.

What are the various therapy options and who will be recommending them?

Parents will find that some of the experts in these institutions may be psychologists or psychiatric social workers. This reflects an important development over recent decades in which there have been many advances in psychological and behavioral treatments that don’t involve the use of medications. There are many forms of therapy, depending on the disorder. The type of psychotherapy I strongly believe is effective for childhood depression is not the same therapy that would be used for children with phobias, or OCD. For anxiety, a behavioral treatment might take the form of relaxation therapy or even biofeedback. There’s a broad spectrum of approaches and impressive advances that have been made across these areas.

When are medications appropriate for children?

There is no blanket approach. Some medications are clearly useful in children, and some studies have shown that it can be useful to give drug therapy and psychotherapy together, at least in the beginning of treatment. I’m often asked by behavioral therapists to consult as a psycho-pharmacologist*. They may want to add a medication to help a child stick with a behavioral therapy. In ADHD, many times a pediatrician will prescribe a stimulant such as Ritalin, and that will solve the problem by itself. However, parents should know that they are not locked in to any one approach. If, a few months after you begin a therapy, it doesn’t seem that you are getting anywhere, you should reconsider and be open to trying a different approach.

Are Ritalin and other stimulant treatments for ADHD over-prescribed?

About 70 percent of youngsters in the U.S. with ADHD are given a stimulant; it is probably the treatment of choice. Stimulants make people more alert and focused. Does your child need such treatment? Parents need to judge how much the problem is interfering with their child’s life. In school, has the child responded to logical first steps, such as sitting in the first row of the classroom, or getting very clear instructions and regular feedback from the teacher? Such approaches can be very helpful in mild cases. You have to go with what produces substantial benefit, in terms of normalizing the child’s life.

Are stimulants addictive?

Parents can take some comfort in knowing that Ritalin and similar drugs are not addictive in children. A child’s mood is not elevated by stimulants. And epidemiologic studies have shown that children with ADHD who take these medications do not have a greater tendency to abuse drugs later on.

Turning to another topic: depression. How can a parent tell the difference between a child who is sad and one who is depressed?

Children do become sad, and this could be due to so many possible triggers. There’s chronic demoralization––you often see this in children with learning disabilities, especially in families in which the parents are high achievers and have trouble accepting the child’s difficulties. Often, children are sad in response to a particular event–– like the loss of pet, as mentioned before. But it could easily be other, broader disappointments. For example, when peers become a very important part of a child’s life, something that intensifies in the teen years, and a child has problems trusting or relating well to peers, this can lead to sadness. If parents are getting divorced––a very common situation—a child may be having a hard time. One or both parents may be putting the child in a difficult position that he or she doesn’t know how to handle. There are also children and adolescents with chronic depression for which there does not appear to be any specific trigger. Getting the right professional consultation is key, especially if the depression is significantly affecting the child’s quality of life.

Let’s discuss what to do in the most serious cases–– when a child is thought to show signs of bipolar disorder or schizophrenia or psychosis.

Childhood-onset schizophrenia is very rare, and when this seems a possibility, getting a consultation from a really experienced mental health professional is critical. Psychosis–– hallucinations, hearing voices––is a symptom of schizophrenia in many adults. However, in children, a broad array of disorders may cause them to report having psychotic experiences. For example, sometimes a seriously depressed child reports hearing a voice saying “you’re a bad person.” The literature indicates that, at some point, about 5 percent of all children talk about delusional things. Yet only 1 percent end up with a schizophrenia diagnosis, which, when it occurs, usually doesn’t start generating symptoms until the late teens or the twenties.

There has been some confusion about bipolar disorder and ADHD. It turns out that some portion of children with ADHD, even when they respond to treatment, have remaining “mood dysregulation” problems. This diagnosis now appears in the latest edition of the Diagnostic and Statistical Manual (the “DSM-5” handbook for clinicians). Bipolar disorder in childhood is very rare.

What advice can you offer parents and siblings living with children who are already diagnosed with serious disorders, from bipolar disorder to schizophrenia and autism?

Following a diagnosis, the first thing parents need to do is make sure that everyone in the family gets on the same page. Sometimes, meeting with a family therapist can help––not necessarily on a regular basis, but for orientation purposes and during times when the child’s condition creates family problems. For example, sometimes siblings will feel that the situation at home is too unpleasant, and they can’t bring friends to the house. The basic rule is: everybody has to feel safe at home. Whether or not you have guidance from outside, it helps to have family meetings in which you talk about what’s going on and what siblings’ roles should and should not be. It’s important for parents to agree on a consistent approach when coping with a child who is ill. It’s also important for parents, if they can, to find a skilled caretaker they trust to look after their child so they can have some time away once in a while, on weekends.

There are many things families can do to help children with psychological disorders. The isolated child with a disorder, who has some interest or talent, may be helped by taking part in a special class or art camp. If a child is interested in computers, he or she could be enrolled in a program that might be an entrée to new friendships.

We’ve seen parents do some amazing things with children who are autistic––very moving examples of children who, because of their parents’ efforts, were able to take part in mainstream education. Sometimes the child’s teacher can educate the class about the child’s problem. In the case of one very sick child I know, this happened and the child’s memories of school went from being very miserable to feeling very good about it. It was remarkable. Of course, you can only think of trying such things in school districts prepared to accommodate children with special needs.

Finally, one of the major changes in the last 30 years is the advent of patient support groups. Such groups exist for most common disorders. There’s a Tourette’s group in just about every city— support groups for children and their parents to meet others in the same situation. The public is now very conscious, too, of a condition like autism. Those who are affected need not be isolated or alone. They should be able to say, “I’m not the only one who has this problem.”

Going forward, what are the prospects for affected families?

I am upbeat. There has been so much useful research on diagnosis, prognosis, and the different types of treatments that are available. Parents will benefit enormously from seeking out good information, and from connecting with the many good support groups. Regarding treatments, many of the medications we have are good. Without question, they have made a tremendous difference for children and for their parents. And with continuing research, we are going to see important new treatments, over time.