By Douglas Bradley, NAMI HelpLine Coordinator
Having a child diagnosed with mental illness is difficult for parents, but choosing a particular treatment can be just as difficult. Every mother and father wants his/her child to be well, but since any treatment (or lack of treatment) has potential side effects, deciding on a therapy can be daunting. To confuse matters even more, the symptoms of a psychiatric illness in children may be different from those in an adult and may be hard to distinguish from normal childhood behavior.
The first hurdle many parents face is finding a doctor qualified to diagnose and, if necessary, provide treatment for their child. As children don’t share all the physical and behavioral aspects of adults, medicine does not regard them as “small grown-ups” but as a distinct population with unique needs. Because of these differences, the best person to properly assess someone younger than 18 for mental illness is a child psychiatrist. However, in most areas there are few, if any, child psychiatrists available. Even when one is nearby, the cost of a consultation, specialized therapy and medicine can prevent parents from getting help--especially since many child psychiatrists do not take insurance. Negative attitudes of family, friends and the community toward mental health treatment can also discourage parents from getting assistance.
Perhaps the biggest cause of the confusion around the differences in diagnosing children vs. adults is the lack of basic research on children’s mental illness and symptoms. While parents and doctors might agree that a child’s behavior and mood don’t seem “right,” there is often disagreement about what these symptoms mean. Furthermore, professionals and parents may have “diagnostic biases.” For example, family members or a doctor might be comfortable with a diagnosis of ADHD, but not bipolar disorder. Others may prefer a bipolar diagnosis, as treatment would not potentially involve stimulants.
Research on therapy in children, as with diagnosis, is far behind that of adults. Reasons include a lack of funding, researchers and research subjects. Also, the FDA has not required data from child subjects in approving new medicines. While off-label use of meds is needed when there is not a research base, physicians and parents often have to make decisions without knowing long-term impacts. Parents themselves may also disagree on treatment. Not uncommonly, one parent will agree to medication and/or talk therapy for the child while the other is adamantly opposed. Sometimes this difference is ideological, but other times it comes from honest but opposing views based on a general lack of information.
Fortunately, there are resources to help family members make informed decisions. To help clarify the risks and benefits of children taking psychiatric medication, The Hastings Center,a bipartisan, nonprofit institute, brought together panelists (including Darcy Gruttadaro, director of the NAMI Child and Adolescent Action Center) who represent all sides of the debate over childhood medication.
While some differences remained at the end of the workshop, there was also consensus on many topics. For example, members agreed that children can have severe mental illness and that the appropriate use of medication can ease a child’s suffering. The panelists also agreed that withholding a beneficial medication was harmful. The main differences of opinion were the criteria used to diagnose, when to use medicine and when another therapy might be appropriate. The panel was careful to note that while the cause of most mental illness is not known, “This situation… is not unique to psychiatry; many diagnoses throughout medicine are not moored in an understanding of the underlying pathophysiology.” Parents can ask question about pros and cons of treatments here, although this site will not give a treatment plan and is not meant to take the place of a doctor’s opinion.
Another resource for parents is the National Institute of Mental Health (NIMH), a branch of the National Institutes of Health, one of the nation’s largest and most comprehensive health research organizations. NIMH has a website on child and adolescent mental health that includes information on illnesses, treatments, and current research.
Lastly, The American Academy of Child and Adolescent Psychiatry, a professional group of psychiatrists who specialize in this field, has fact sheets on mental health, substance abuse issues and effects of medication on children. Perhaps most useful is the nationwide child and adolescent psychiatrist finder which can allow a family to begin treatment and healing.
Caring for a child with mental illness is confusing, difficult and sometimes scary. However, the resources listed above can assist people having to make tough decisions. Also, as the needs of young patients are increasingly recognized and more research is conducted, the choices for parents, and the lives of the affected children, should become easier.