Attending a substance abuse workshop to become more informed about a disease that has affected my family, I shared with the presenter on co-occurring disorders that my son, who was 20, was diagnosed with early onset bipolar disorder when he was 12. Almost before the words were out of my mouth, the professor of psychiatry started shaking his head. I knew where the conversation was heading, as will other parents of bipolar kids who are reading this, because most of us are familiar with how bipolar disorder was considered a disease of adults until the mid 1990s; then how early-onset bipolar disorder became the disease du jour, its diagnoses more than doubling in ten years by some accounts, skyrocketing by forty-fold between 1994 and 2003 according to other sources.
The professor patiently explained to me that juvenile bipolar disorder had been overdiagnosed due to the influence of the pharmaceutical industry. "But is it a real disease?" I asked, resisting the urge to tell him I am familiar with the conflict over juvenile bipolar disorder. "Yes," he admitted. "Does it have different symptoms than adult bipolar disorder?" I persisted. He acknowledged that it did.
I felt like my next question should be Do I look like an idiot? I had told the man my son was diagnosed in the 1990s; it was 8 years later. I had obviously lived with a family member with this disorder, been involved in his care, supervised therapy and psychiatric visits as well as medication, interfaced with teachers and the community. Did he think I didnt know anything about juvenile bipolar disorder? I am the boys mother. I was his caretaker, protector, and advocate. Or am I being a tad sensitive?
Why would a well-respected, well-informed psychiatrist, who knows nothing about my son discourage me from accepting my sons diagnosis? Even given the overdiagnosis of juvenile bipolar disorder, isnt there perhaps a 50/50 chance that my son did have it? If the nondefinitive but persistent belief was that doctors had been persuaded by drug manufacturers to misdiagnose a disease, couldn't it be equally true that a media backlash of exposes on television and in mainstream consumer magazines was culpable in persuading doctors that a legitimate disorder was not a disease?
Of course, I had read The Bipolar Child "bible" by psychiatrist Demitri Papolos and his journalist wife Janice when my child was diagnosed. I was a member of the forum of the Child and Adolescent Bipolar Foundation, exchanging information and support with other parents. I conducted inservice trainings on early onset bipolar disorder for my son's teachers and school staff. I attended NAMI (National Alliance on Mental Illness) support groups. Also, I knew my child and his symptoms very well. Bipolar disorder may be called a catch-all diagnosis for children. Autism and Attention Deficit Disorder have had those distinctions at one time or another as well--but science does not support its interpretation as a fad. My sons diagnosis was made by a careful and thorough child psychiatrist who had an opportunity to observe him off all meds in a clinical setting. It is a disorder that has some genetic precedent in his family of origin. It was confirmed by three subsequent psychiatrists. It is frustrating that someone who does not even know him would undiagnose my son, but indicative of the weight a mothers words carry. Not much. When I saw my sons childhood therapist a few weeks after that incident I mentioned the backlash against early onset bipolar disorder. The therapist unexpectedly said that in 35 years of practice with adolescents he had never seen a child who more clearly exhibited the symptoms of juvenile bipolar disorder. I suddenly felt very tired, and very emotional. I had a witness. I had a witness who had seen and heard what I not only could not convey to other professionals but what they were not interested in knowing.
I had a witness who was not just another mom of a kid diagnosed with juvenile bipolar disorder who knew what I knew but to whom no one listened. I silently blessed all the moms who had supported me in seeking help for my son. I was stunned and electrified by gratitude at the same time I was exhausted and rubbery with relief.I had a witness who knew my son and me, and who had a license for therapeutic practice and had seen my son individually, in groups, and in family therapy for years. I did not have to explain anything--the suicide attempts, the overdoses, the crippling side effects as we searched for the right medications to control depression and mania, dysthymia and disinhibition, the incredible brilliance of a child who was so perceptive and intelligent and sweet he swept us off our feet. I had a witness, an expert witness, who did not make me feel guilty because I believed in juvenile bipolar disorder. We both understood, as few others can, that if my son had not been correctly diagnosed when he was 12, he would be dead. I had a witness. But I feel bad for the many families whose observations and feedback, experience and knowledge are ignored. If early onset bipolar disorder is a legitimate disease with different symptoms than adult bipolar disorder, then someones child must have it--and a mother might know which child that is. I hope she has a witness. Judy Kirkwood was her sons advocate for informing his teachers about early onset bipolar disorder until he took over advocating for his self.