Welcome to Childhood Made Crazy, an interview series that takes a critical look at the current “mental disorders of childhood” model. This series is comprised of interviews with practitioners, parents, and other children’s advocates as well as pieces that investigate fundamental questions in the mental health field. Click here to learn more about the series, to see which interviews are coming, and to learn about the topics under discussion
Gina Nikkel, Ph.D., is president and CEO of the Foundation for Excellence in Mental Health Care. An associate clinical professor of Psychiatry at Oregon Health and Sciences University, Gina served as Executive Director of the Association of Oregon Community Mental Health Programs for 11 years before taking the helm of EXCELLENCE as President and CEO.
EM: How would you suggest a parent think about being told that his or her child meets the criteria for a mental disorder or a mental illness diagnosis?
GN: I would suggest that parents think of it as an opportunity to learn more about what a diagnosis in the mental health world really means (and what it doesn’t mean) and whether it is helpful or not; that diagnoses are imprecise and that there is no lab test that can confirm any of them.
They are based on a subjective assessment of behaviors so they are not like medical diagnoses. A parent should press the psychiatrist or mental health professional to focus on what’s been happening to and around the child rather than the “what’s wrong with him/her” approach of diagnosis.
A parent should learn all they can from a variety of sources. Get a care team and a second opinion. Learn about trauma-informed care. Trust your gut instincts. A diagnosis is helpful to some, harmful to others. It is not a life sentence and people do move through and often grow from a mental health challenge. Also, if the child is an adolescent or young adult, the role of any alcohol or other drugs should be considered. It can be complicated.
EM: How would you suggest a parent think about being told that his or her child ought to go on one or more than one psychiatric medication for his or her diagnosed mental disorder or mental illness?
GN: We are learning more and more about psychiatric medications every day and their side effects, especially with children. Ask questions … ask to see the research. Talk to other parents and people who took the medication(s) as children and are now adults. Visit websites such as RxISK.org and mentalhealthexcellence.org to weigh the benefit against the serious risks.
Be tenacious with your inquiries. Ask your child’s doctor about outcomes, short-term and long-term as well as side effects and risks. I would encourage the parent to be extremely skeptical that psychiatric medications will be helpful other than to mask some symptoms for a short period of time. I would tell them that polypharmacy is really frowned on by most responsible practitioners and that most of the research that professionals rely on has been funded and/or shaped by pharmaceutical corporations whose first allegiance is to their stockholders and not the best interests of children or families.
EM: What if a parent currently has a child in treatment for a mental disorder? How should he or she monitor the treatment regimen and/or communicate with mental health professionals involved?
GN: We need to be advocates for our family members in any kind of health treatment, but especially for our children and especially in mental health. Even the most conscientious and well-informed professional just doesn’t know the child like a parent does and that knowledge is valuable.
Parents should know they have every right to be very involved; communicate often with involved mental health professionals and keep a journal so you can report accurately about mood, sleep, and behavior. They should help their child and the therapist to be open to family sessions in addition to individual therapy. Question changes in treatment plans if you don’t understand why the changes are being made. Be an ally and a partner.
EM: What if a parent has a child who is taking psychiatric drugs and the child appears to be having adverse effects to those drugs or whose situation appears to worsening? What would you suggest the parent do?
GN: Talk to the prescribing doctor and/or treatment team immediately. Unless there are severe side effects or sudden signs of suicide (especially with antidepressants) DO NOT DISCONTINUE MEDICATIONS abruptly without talking with them first. Withdrawal effects can be harmful or life threatening without monitoring. Ask questions and learn in detail about prescribed medications. Take advantage of educational opportunities for yourself as well as sharing them with your doctor.
GN: Slow down and really take the time to listen and connect. There are a lot of professionals, parents, and people with lived experience who are going through or have gone through the same thing. Educate yourself and don’t be afraid to ask for help. While the Foundation for Excellence in Mental Health Care is a Community Foundation (think “mental health development bank”) and not a service provider, we do have some resources listed on our website that will help you begin to gather tools and strategies to help your child and your family navigate those challenging times and come through them stronger.
EM: What sort of work does your organization do?
GN: The Foundation for Excellence in Mental Health Care is a global community foundation created by a team of people including psychiatrists, psychologists, mental health professionals, policy makers, philanthropists, people with lived experience, and family members to improve mental health outcomes. We match the passion of private donors with the world’s best researchers and programs to bring recovery practices to every community.
It’s a tall order and it will take all of us to have conversations and learn from each other to create the best educational resources, programs, and research to accomplish our mission. We are also committed to do this work with private philanthropic dollars so that there is no commercial interest in the outcome of our research or the content of our educational tools.