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Raising Generation RxReview - Raising Generation Rx
Mothering Kids with Invisible Disabilities in an Age of Inequality
by Linda Blum
NYU Press, 2015
Review by Lloyd A. Wells, Ph.D., M.D.
Aug 11th 2015 (Volume 19, Issue 33)

I was struck by the title of this book by Linda Blum, and especially by the term "Generation Rx", related to the huge number of children and adolescents receiving psychotropic medicines in the United states.  Unfortunately, in my opinion, the rest of the book is not as good as its title.

          It is based on a series of interviews with 48 mothers of children with psychiatric disorders, primarily ADHD and autism.  And the story is worth telling:  it is extremely difficult for mothers of all social classes and levels of education to navigate the incredible, jargon-replete bureaucracies of the schools and their Special Education programs, public services, and psychiatry, as well as their interfaces with each other.  It is extremely difficult for all mothers, and more difficult for those who are poor, single, or members of minority groups.  This book details their accounts of these difficulties.  While Blum refers to the childhood disorders as "invisible", this seems to be a poor term since the behaviors associated with them are often very visible indeed.

          The book's early pages document the fact that 6 % of American children have been prescribed psychotropic medicines, and they outline themes which will be developed with the book:  persistent blame of mothers when a child has problems; mothers and children living in an increasingly "neoliberal" society in which responsibility for care of such children devolves increasingly on the family rather than the government or society; and the growing culture of "medicalization" of children, somehow and vaguely intertwined with "neuroscience".  Indeed, Blum cites self-help books for parents such as Brain Rules for Baby, which suggest that mothers who do not stay married risk neurological harm to their children and that parental divorce may lower the IQ's of the divorcing couple's children.  These books are based on flimsy science.  Here, as elsewhere in the book, Blum acknowledges the helpful role of medicines and also trivializes them -- e.g. "infamous Valium" or the assertion that psychiatric medicines "appear to be like performance-enhancing drugs for athletes, a nearly accepted method to ensure that struggling kids receive all the enrichment and cultural capital their families have to offer -- from fashions to summer camps.  Just as in the sports world, the drugs seem to be met less with outrage than with knowing winks and clever, alliterative phrases..."  But she also talks of "wonder drugs".

          Another theme of the book is summed up in the author's phrase, "authoritarian professionals", and she provides good examples of this unfortunate phenomenon, but also many examples of teachers and doctors who are egalitarian and who go to great lengths to help children and their parents.

          Blum discusses her sample of forty-eight mothers.  This is not a random sample, and she discusses strategies for non-random samples, but this is the keystone failure of the book:  one simply cannot draw any sweeping conclusions from this sample.  The book does not provide scientific data, and this is frequently important as Blum generalizes from her data.  For example, she writes about the use of antidepressants by mothers, "Fewer married mothers reported relying on such medications, perhaps evidence that even a good-enough marriage offers important protection..."  In fact, this is "evidence" of nothing, given the flawed sample.

          There is much discussion of the difficult decision to provide prescribed medicines to a child, an act which is viewed through many lenses, as it should be.  The mothers interviewed demonstrated genuine ambivalence about this decision, and the author's apparent bias further colors their accounts:  "She relented to administering" ( pills), and "...Medications ramp up the amount of discrediting, disgraceful information mothers must manage."  Where are the data?  Blum has deficits in knowledge about psychotropic medicines in children and adults.  She is surprised by and critical about off-label use of medicines in children, apparently not realizing the difficulties of getting drug trials for this population (and others, including women and the elderly) approved.  But much off-label use has a thorough and well-reasoned rationale and is in wide clinical use.  She refers to Valium as a "diazepam tranquilizer".  Diazepam is simply the generic name of Valium.  She relates the popularity of Prozac to the increase in methylphenidate use in the 1990's -- but stimulant medicines are very old and have completely different indications.  Blum also lacks knowledge about psychotherapies, writing, for example, "Judith had also rarely been without a psychodynamic 'talk therapy' provider (though avoiding those based in Freudian perspectives).  But psychodynamic therapy is based on Freud's psychoanalysis, and one cannot find a provider of psychodynamic psychotherapy who is not heavily influenced by Freud.

          The author and the mothers she interviews do a wonderful job of describing the labyrinthine complexities of Special Education and the mental health system as the mothers attempted to get help for their troubled children.  As a child psychiatrist well versed in the complexities of these systems, I have  found it hard to navigate both systems.  It is made more difficult when Special Education or Psychiatry adopts the jargon of the other.  Thus the frustration of one of the mothers when school personnel were telling her that her child was "mentally ill" -- a diagnosis not in its purview -- when she was trying to get him  characterized educationally as having "special needs" so that he could get help from the education system.

          The term, "mental illness", is a sore point among parents.  Only three of the forty-eight mothers viewed their children as "mentally ill", though almost all the children had a psychiatric diagnosis, and some appear to have been significantly psychiatrically impaired.  I understand (and agree with) parents' reluctance to view or acknowledge their children as "mentally ill" -- an unfortunate and nearly meaningless term -- but think such awful and misleading euphemisms as "neurodiverse" are at least as bad and often worse.

          As portrayed (largely accurately) in the book, the medical system could be a lot more helpful. The mothers mention that it is very difficult to get a timely appointment with a psychiatrist or psychologist, and that, often, in the psychiatrist's office, there is an impetus to prescribe medicine without any real understanding of the child.  I fear that this is very true.  One would expect that the rich would receive far better treatment than the poor, and perhaps they believe this, but it is not necessarily true.  A wealthy mother pays a "psychopharmacologist", who seems always to be available to her.  There is no profession of "psychopharmacologist", and, if the mother's accounts are accurate, this psychopharmacologist provides unfortunate treatment.  But the mother relishes her relationship with this professional:  "He has this really annoying habit that he goes away ... for the months of July and August.  It's a horrible habit.  I'm going to have to fix that about him.  I'm going to work on it."  While this mother believed her child was receiving superb care, I am not so sure.  Many poor children with a caring and well-informed doctor may do better, even if they do not have twenty-four hour daily telephone access to the doctor (except for July and August).

          The issue of doctors being judgmental is ubiquitous, even if, sometimes, mothers fear this response without actually encountering it.  One mother says, "I'm always up front about the attachment parenting and the sleeping and everything.  And I always say, 'We did this ... after careful research...'  I don't want to hear that sort of parenting being blamed for me son's problems..."  But no one has apparently blamed her for it, though so-called attachment parenting has little research to support it, and many professionals would not recommend its use with the children described in this book.  How can one convey such advice without making a parent feel "blamed"?  Blum quotes a good example:  "'The exam came back and they told us that he was very bright, which we all knew, and that he had major psychological issues revolving around his separation from me... Oh, yeah, it was total blame on me:  mom blame.'  Judith was one of just four mothers to report such seemingly dated, Freudian-style mother-blame..."  But separation anxiety is a dyadic, child-parent phenomenon whether viewed from a Freudian framework, a behavioral one, or even a pharmacologic one.  It is no one's fault.  In my experience, most mothers are grateful to know what is wrong and that they can be a huge part of the solution.  Few focus on "being blamed".

          One telling criticism of psychiatry deserves quotation:  "You think there is some science behind this.  Or that there are years of valuable clinical experience... We began with expectations of a certain level of competence, professionalism, knowledge... But...'No, we don't know what the side effects are... We don't know what it does or how it works."  Many psychiatrists know the side effects, what it does, and scientifically informed hypotheses on how it works -- but perhaps not all.  Or again, "If his behavior actually got worse, then I'd call up Dr. S.  And she would say, 'Oh, OK.'  And the next thing I knew I had a prescription for yet another drug!"

          The school bureaucracy, with all its rules, often poorly conveyed to parents and children alike, is equally or even more difficult for mothers to navigate.  The mothers interviewed in the book give many examples.  A telling one:  "You know, I'm a very intelligent person, but I don't know much about the WISC... and scaled scores and the Peabody Picture Identification Test, and the test of receptive vocabulary.  I mean what the hell!... And I just felt that this was the most surreal experience... (Micah) was just being pathologized by people who have had such minimal contact with him... plus there's this use of very advanced jargon... 'Well, I ran the Beery Test of Visual Motor Integration...'  Don't hide behind your jargon!"

          "Zero-tolerance" policies, which plague the schools, are an especially poor fit for many children in Special Education programs.  As the author comments, "Zero-tolerance policies ignore the context provoking aggression and may too readily single out more vulnerable, already victimized boys.".

          As the book proceeds to address issues affecting unmarried mothers, gender stereotypes and non-white mothers, the author becomes more contentious and strident.  A non-random sample of 48 mothers cannot possibly provide hard evidence for her views.  One affluent mother, for example, describes a good relationship with her son's physician, but, Blum concludes, (parents' getting help from the private sector) "creates a commodified, asymmetric transaction despite the compassion of practitioners.  Even when on a first-name basis ... such hollow substitutes are thus another paradoxical consequence of social privilege."

          She writes of "the disproportionate number of boys and young men diagnosed with invisible disorders" which "intersect with social and class divides to shape and reshape the gendered meanings by which we think about such burdensome or precarious children."  Really?  Based on a non-random sample of 48 mothers?

          She quotes Gilligan:  "...The gendered basis of childhood medicalization stood out strikingly to feminist theorist Carol Gilligan, who provocatively asserted ... that we medicate kids who might challenge gender conformity."  (An interesting assertion, to be sure.  In forty-three years as a child and adolescent psychiatrist, I started and maintained many patients on medicines but do not ever recall asking myself, as I pondered the very important question of starting a medicine, "Well, is he likely to challenge gender conformity?")

          Blum seems to view the involvement of child protective services with some of the mothers as an affront to them rather than an important attempt to help possibly neglected or abused children.  She views this involvement as "the stigmatization of single mothers" -- but it saves lives.

          Blum comments on the fact, which is well-researched, that mothers do far more work with children than fathers.  She mentions one father who participated actively in his wife's interview, then muses, "In a sense, this episode was a display of privilege -- in Rick's command of his time in the working day and the cultural symbolism of his involvement in his son's disabilities..."  (She does indicate, however, that this may be a sign of a good marriage.)  She adds elsewhere that, for these mothers, the presence of a husband is a crucial cultural resource -- again, without good data.

          I have dwelled on negative features of this book, to which I would add that it is highly repetitive.  On the positive side, the idea of the book -- how mothers with troubled children deal with very difficult and different systems which powerfully impact these children -- is a very good one.  The comments of some of these women are wise, poignant, and sometimes funny.  I wish the book had even more from the mothers and less from the author.

          But the author makes some excellent points, perhaps the most important one being about neuroscience, to which she refers throughout the book.  The disorders of the children depicted in the book are often portrayed to the public as neuroscientific, and much of the advice given to parents, especially in the popular press, purports to be based on neural sciences.  But the science, as applied to human development in general and these disorders in particular, is as yet far from robust.  The author states, "Neuroscience finds its purchase precisely because of its 'affinity' with the privatizing values of neoliberalism so convenient for postindustrial firms in the face of global competition... It is largely this 'convergence of interests', this minimizing of public obligations, which gives neuroscience its more ominous edge."  Food for thought.

          One is left realizing that the mothers of this book have a very hard task.

 

© 2015 Lloyd A. Wells

 

Lloyd A. Wells, Ph.D., M.D., Emeritus Consultant, Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota


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