On December 13, 2006, a four year old girl named Rebecca Riley died of an overdose of prescribed medication. Her parents had given her a toxic combination of Seroquel, Clonodine and Depakote, along with an over-the-counter cold medication. Their reasons for the medications were to calm a child who had been diagnosed with bipolar and ADHD when she was two years old. Her parents were to eventually go on to face charges of murder after the autopsy confirmed that she had died from the mixture of these medications. While her parents were convicted of all changes in 2010, the prescribing physician, Dr. Kiyoko Kifuji, faced a whole different scrutiny, and one that put the entire psychiatric community on notice.
This is where the problems with DSM-IV are on display. In the diagnostic manual that was established in 1993 by a committee of leading psychiatrists, the wording for diagnosing bipolar and other disorders did not clarify at what age a person could receive said diagnosis. In other words, what is considered abnormal at say twenty, would also be construed as abnormal in a two year old. In Rebecca’s case, Dr. Kifuji, who worked at Tufts Medical Center in Boston, readily admitted that her diagnosis of Rebecca and her two siblings with mental illness at young ages was influenced by her working relationship with Dr. Joseph Biederman of Massachusetts General Hospital, considered the cult-like figure around the cause of early diagnosis of bipolar.
Dr. Biederman, chief of pediatric psychopharmacology and associated with Harvard University, believes that the moment a child is born is the time to begin looking for bipolar and other mental health disorders. What was once diagnosed as a disease in young adulthood can now be diagnosed when a child is a mere toddler, meaning that the child can begin receiving antipsychotic medication for behavior that most would consider “the terrible twos.” He considers his work to be breakthrough science on par with the first vaccinations of disease. Kifuji was one of his followers.
The reason why he can make these diagnoses at this young age is because DSM-IV doesn’t limit him. What also was not limited was the financial windfall Dr. Biederman enjoyed from the pharmaceutical companies. By one account, Biederman earned $1.6 million from his consultations to these companies from 2000 to 2007. He failed to report all but $200,000 to Harvard. At one point Biederman was receiving funding from 15 drug companies and served as a paid speaker or advisor to seven of them, including the makers of Zyprexa and Risperadal. Court documents filed over the years indicate that Biederman told drug maker Johnson & Johnson that planned studies of its medicines in children would yield results benefiting the company. He went on to receive $700,000 in funding from Johnson & Johnson.
The investigations into his conflict of interest concluded in 2011 with Harvard sanctioning (read: slap on the wrist) Biederman and two of his colleagues. He is at present the subject of a lawsuit filed by over 2000 families whose children were harmed by Risperadal. Unfortunately the damage to children, and the credibility of research in psychiatry, has already been done. The $14.6 billion made in annual sales of antipsychotic medications is the reason.
Why then would anyone protest a revision of DSM-IV? Enter DSM-5 (roman numeral has been removed). With the illustration of what is wrong with the current DSM, it would seem like a good idea to find wording that prevents the type of abuse displayed by Biederman and Kifuji in diagnosis and treatment. But the opposite is about to happen in May 2013, when the DSM-5 manual is released. The American Psychiatric Association, creators and publishers of the DSM manual, are about to expand into more behaviors that are considered part of the human experience and create a label that fits a conjured diagnosis (pejorative intended). Not only can your toddler be effectively diagnosed with a myriad of disorders but now you teenager, going through typical teenage angst can have a potential psychosis assigned to the behavior.
To be fair, there are some children who display symptoms of mental health disorders at a young age, perhaps a correlation in line with autism where there is a genetic predisposition with an environmental trigger. Consider the case of a family I mentored. Their three year old son had just been diagnosed with ADHD, bipolar and schizophrenia. He received the diagnoses under the parameters of the DSM-IV for these disorders as well as a series of brain scans conducted by the well-know southern California clinic. The attending physicians gave the news that their son needed to start three antipsychotic drugs right away, although the safe dosage levels were considered unclear because these medications had never been approved for children. No matter because in a matter of about five years the meds would stop working and their son would face institutionalization. At this point the mother hung up the phone and called me for advice, thus beginning their odyssey out of mental illness the way autism families do. . .diet, biomed and behavior therapies. Medications would have to wait and the DSM-IV diagnoses would have no bearing on their decisions.
Dr. Allen Frances, the one who wrote DSM-IV, is not proud of his work. In an interview with Wired Magazine he makes it clear that it is “bullshit” to define every neurosis known to mankind. The DSM-IV is a project that he now regrets participating in because of the ensuing abuse. Instead of adding in more neurosis for common human experiences, he had hoped that the DSM-5 committee would fix the problems with DSM-IV. But they didn’t. He now accuses these former colleagues of the worst kind of intentions mixed with bad science and hubris, all to benefit the bottom line of drug companies.
He’s not the only scientist with these reservations about the upcoming changes. The idea that drug companies have a hand in the upcoming DSM-5 has caused a huge alarm in the psychiatric community, with several open letters from recognized psychiatrists objecting to the lack of transparency and sound science coming from the DSM-5 committee. Many, if not most, see the pitfall of loss of credibility when they become further beholding to pharmaceutical remedies for what is considered normal maladies, especially in wake of the fact that the diagnostic criteria is being reduced in some of these disorders.
Since 1952 the Diagnostic Manual has been considered the bible of psychiatry, giving it a sense of legitimacy on par with medical community, which is why this upcoming version of the DSM is getting a justifiable pushback from the community. It’s a grassroots campaign spurred on by the very members that are the most affected—the psychiatrists and mental health workers. What is ironic is that they are launching the first salvo against the establishment, with the repercussions unknown to them or to the public at large. They want to stop this out of control train before it reaches the station. It would be nice to see some moxie and pushback coming from pediatricians on the vaccine schedule, but that’s another day perhaps.
Why this matters to us in the autism community is that our children face greater scrutiny to potential new labels, with the only course of treatment coming from the pharmaceutical companies. Of course our children already face a greater likelihood they will be medicated at some point in their lifespan with an antipsychotic medication, but add on another potential label and the risk of this possibility rises. And children without a diagnosis of autism face a greater likelihood that their normal life reactions to their experiences may be interpreted as a new neurosis. The potential for abuse is huge.
A portion of one of the concerned Open Letters dated January 4, 2012, submitted by the Society for Humanistic Psychology Division of the American Psychological Association to the APA, sums it up:
We thus believe that a move towards biological theory directly contradicts evidence that psychopathology, unlike medical pathology, cannot be reduced to pathognomonic physiological signs or even multiple biomarkers. Further, growing evidence suggests that though psychotropic medications do not necessarily correct putative chemical imbalances, they do pose substantial iatrogenic hazards. For example, the increasingly popular neuroleptic (antipsychotic) medications, though helpful for many people in the short term, pose the long-term risks of obesity, diabetes, movement disorders, cognitive decline, worsening of psychotic symptoms, reduction in brain volume, and shortened lifespan (Ho, Andreasen, Ziebell, Pierson, & Magnotta, 2011; Whitaker, 2002, 2010). Indeed, though neurobiology may not fully explain the etiology of DSM-defined disorders, mounting longitudinal evidence suggests that the brain is dramatically altered over the course of psychiatric treatment.
In sum, we have serious reservations about the proposed content of the future DSM-5, as we believe that the new proposals pose the risk of exacerbating longstanding problems with the current system. Many of our reservations, including some of the problems described above, have already been articulated in the formal response to DSM-5 issued by the British Psychological Society (BPS, 2011) and in the email communication of the American Counseling Association (ACA) to Allen Frances (Frances, 2011b).
In light of the above-listed reservations concerning DSM-5’s proposed changes, we hereby voice agreement with BPS that:
• “…clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation.”
• “The putative diagnoses presented in DSM-V are clearly based largely on social norms, with 'symptoms' that all rely on subjective judgments, with little confirmatory physical 'signs' or evidence of biological causation. The criteria are not value-free, but rather reflect current normative social expectations.”
• “… [taxonomic] systems such as this are based on identifying problems as located within individuals. This misses the relational context of problems and the undeniable social causation of many such problems.”
• There is a need for “a revision of the way mental distress is thought about, starting with recognition of the overwhelming evidence that it is on a spectrum with 'normal' experience” and the fact that strongly evidenced causal factors include “psychosocial factors such as poverty, unemployment and trauma.”
• An ideal empirical system for classification would not be based on past theory but rather would “ begin from the bottom up – starting with specific experiences, problems or ‘symptoms’ or ‘complaints’.”
The present DSM-5 development period may provide a unique opportunity to address these dilemmas, especially given the Task Force’s willingness to reconceptualize the general architecture of psychiatric taxonomy. However, we believe that the proposals presented on www.dsm5.org are more likely to exacerbate rather than mitigate these longstanding problems. We share BPS’s hopes for a more inductive, descriptive approach in the future, and we join BPS in offering participation and guidance in the revision process.
To this end we can all agree for the need to stop, pause and re-evaluate the DSM-5 proposal. It’s just that now the mental health professionals are leading the way against this train wreck. Let’s hope they are successful.
Rebecca Riley’s death will never be justified as collateral damage for the greater good, although the practice of over-prescribing medications has the same effect as Russian-roulette on the health of our kids. The $2.5 million judgment against Dr. Kifuji awarded to the “estate” of Rebecca Riley will remain a hollow victory. About the only good that came out of the senseless tragedy is that we as a society are waking up to the abuse of power that is inherent in our established medical and psychiatric professions, with collusion and conflict of interest rife at the highest levels.
And that family with the three year old boy? Today he is eleven, fully main-streamed and virtually symptom free. . . and not on any medication! It turns out that he was missing the gene to make his own glutathione (very common in mental health patients), meaning he was unable to detox the environmental triggers. With IV glutathione and a myriad of other alternative treatments their son showed almost immediate improvement. This is when we begin to wonder if the lack of treatment for autism coming from the traditional medical community might actually be a blessing. This family will tell you yes.
Maybe one day there will be an Occupy-Pharma movement with those both in and out of the establishment bent on change, holding these companies, government agencies and medical associations fully accountable. Oh, we can only hope. Until then, we can only be aware of what is coming.
Mary Romaniec has been a mentor to families who have a child with autism, and a consultant on special education issues. She is the author of numerous published articles and the creator of the 10 week GFCF calendar. Her book The Autism Revolution: Empowered Parents, Recovered Children is forthcoming. She can be reached at MRomaniec@aol.com.