Changing Trends of Childhood Disability, 2001-2011

Philip Hickey, PhD
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On August 11, Pediatrics, the official journal of the American Academy of Pediatrics, published an article by Amy Houtrow, MD, et al.  The article is titled Changing Trends of Childhood Disability, 2001-2011.

Here are the authors’ conclusions:

“Over the past decade, parent-reported childhood disability steadily increased.  As childhood disability due to physical conditions declined, there was a large increase in disabilities due to neurodevelopmental or mental health problems. For the first time since the NHIS began tracking childhood disability in 1957, the rise in reported prevalence is disproportionately occurring among socially advantaged families. This unexpected finding highlights the need to better understand the social, medical, and environmental factors influencing parent reports of childhood disability.”

The study was based on data derived from the CDC’s National Health Interview Survey (NHIS).  This survey has been conducted annually since 1957, and involves interviewing a random selection of families concerning their health problems or concerns.

The present study examined responses for almost 200,000 children aged 0 to 17 in four time segments across the decade 2001-2011.

Overall Prevalence

The prevalence of disabilities due to chronic conditions is given in Table 1.

Table 1 Prevalence of disabilities by sociodemographic characteristics, US children ages 0-17, 2001-2011

Houtrow Table 1 edited and snipped

This table and Table 2 presented below have been altered from the corresponding tables that appeared in the Pediatrics article.  Two central columns of data (for the periods 2004-2005, and 2007-2008) have been omitted for ease of presentation.

As can be seen, the overall prevalence of disability increased by 15.6% between 2001 and 2011.  What’s surprising, however, is that the prevalence increased most for the highest earning group (i.e. 4 times poverty level and above).  The increase for that group was 28.4%, whereas the increase for those earning below poverty level was only 10.7%.  Note that the actual prevalence is still higher in the poorer group, 102.6/1000 vs. 62.9/1000 for the wealthier group.  But the disability rate for the latter group is increasing at almost three times the rate as for the former.

Also noteworthy is the fact that disability prevalence for children of parents with college degrees increased by 39.3% for the decade, whereas the increase for children whose parents had a high school diploma was 1.0%, and for those whose parents had less than a high school diploma 9.5%.

The authors note that the high rates of increase in childhood disability in the more advantaged households was “unexpected.”  They state:

“During the first 40 years of the NHIS, disability rates increased at similar rates for all income groups, with a clear social gradient where children from lower-income families were reported to have higher levels of activity limitations.”

Prevalence of Various Conditions

The prevalence figures for the various disability-linked conditions are shown in Table 2.

Table 2 Prevalence of chronic conditions associated with disabilities, US children ages 0-17, 2001-2011

Houtrow Table 2 edited and snipped

The most striking piece of information in Table 2 is that although disabilities related to physical health conditions declined by 11.8% overall, disabilities related to “neurodevelopmental or mental health conditions” increased by 20.9%.  The increase attributed to ADHD was 22.0%; mental retardation 63.0%; and other mental, emotional, or behavioral problems 64.7%.

The increase due to mental retardation is surprising.  Almost all of the increase occurred in the period 2010-2011, and the authors suggest that it may be due to the change in terminology (from “mental retardation” to “intellectual disability”) that occurred about this time.

Prevalence and Sociodemographics

The authors then compared the mental/neurodevelopmental disability trends with the same sociodemographic variables shown in Table 1.  Their results are shown in Table 3.

Table 3 Change in prevalence of neurodevelopmental or mental health conditions by sociodemographics, 2001-2011

Houtrow table 3 minus title

 

And, again, we see the same pattern.  The highest increases were for children under the age of 6, and for children in socially advantaged families (i.e. family income four or more times poverty level, and parents with college degree or higher).

Discussion

The authors point out and discuss the limitations of their study. These include the fact that the disability data is broken down only by the 14 categories that have been used in the interview surveys.  Secondly, the data is based on parent report rather than on direct observation of the children.  Nevertheless, the procedures and categories used are essentially similar to those used since 1957, yet the trends noticed in the present survey represent a significant departure from previous experience.

So, to summarize:  over the decade 2001-2011, the prevalence of parent-reported disability in children rose by 15.6%.  But surprisingly, the greatest increases occurred among children in socially advantaged families, and in children under the age of 6.

Even more surprisingly, the incidence of disability due to physical conditions declined by 11.8%, while disability due to mental/neurodevelopmental conditions increased by 20.9%.  And here again, the highest increases were among children under the age of 6, and children from more advantaged homes.

The authors suggest that at least some of the reason for these changes over time may be artifactual.

“There have also been changes in diagnostic labeling and thresholds: for example, a child formerly considered distractible may now be seen as diagnosable by parents, teachers, and health professionals.”

And:

“The increase in neurodevelopmental or mental health conditions was especially high among young children, a finding that may be attributed to increased awareness of these conditions and the need for a specific diagnosis to receive services such as early intervention.”

The authors suggest a number of reasons why disability in socially advantaged children is increasing faster than in other groups.  These include:  expanded use of diagnostic and treatment services; better access to care in advantaged families; greater acceptability of a mental health diagnosis among higher-income families; and diagnostic biases.

“Greater acceptance of mental health diagnoses by more advantaged parents, coupled with persistent diagnostic biases, may help explain the trends identified by this research.”

The authors call for additional research:

“Additional research is necessary to assess the impacts of changing diagnostic labels and thresholds, evolving cultural views of health and disability, variable access to health services, the contribution of provider biases, and the incentive for a diagnosis to receive services.”

Note particularly the phrase:

“…evolving cultural views of health and disability…”

The phrase is a little vague, but I believe it’s a reference to the fact that the proliferation of psychiatric diagnoses has had profound cultural and societal implications.  Problems that previous generations considered eminently resolvable, through individual and collective effort, are now seen as disabling illnesses, that require professional intervention and drugs.  Psychiatry isn’t just damaging its current clients, it is systematically laying the groundwork for future generations to think of themselves as damaged and powerless, and to seek psychiatric services.

It is particularly ironic that this process is accelerating to the degree shown in this study at a time when significant declines are being noted in reported physical disabilities.  In the very decade that physical disabilities declined by almost 12%, neurodevelopmental/mental “disabilities” increased by almost 21%.  In other words, although children are actually becoming less disabled, they are being given the message (and their parents are accepting the message) that they are more disabled.

At least part of the reason for this stems from the fact that while the prevalence of physical disability is limited by the prevalence of the particular pathology in question, no such limitation applies to “psychiatric disabilities.”  Through the creative adjustment of criteria thresholds and the flagrant invention of new “illnesses,” psychiatrists can expand the scope of their practice, and consequent “disabilities,” more or less at will.  And, as the expansion of the DSM across five editions demonstrates, they have not been shy in the pursuit of this endeavor.

There is truly no human problem that psychiatry can’t make ten times worse.

* * * * *

This blog appears also on Philip Hickey’s website,
Behaviorism and Mental Health

25 COMMENTS

  1. Dr. Hickey it seems that I am the first to chime in here. My Sociology professor thought us about Thomas Kuhn who wrote about the process of scientific revolutions. According to his model, in contrast to Karl Popper, scientists conduct experiments and gather evidence in order to confirm their particular understanding of the world, but when too many counter instances or anomalies pop up they are forced to find an alternative explanation. It seems that in the course of your work, you are constantly uncovering a batch of anomalies, and that it is beyond high time that we search for answers beyond the biopsychiatric paradigm.

  2. A part of the problem can be found in these anti stigma campaigns spearheaded by NAMI and other ‘consumer advocacy’ organizations. Another problem is the way the support services are set up to serve the parents, not the children. These anti stigma campaigns are inviting people to have empathy for children because they have a genetic or biologically based illness, not because they were exposed to abuse, bullying, homophobia, violence, etc. The legislation that parents are pushing for creates policies that favor the parent over the child’s interests and the narrative that parent support groups are receiving is full of outdated, biased, and unsupported scientific data.

    This environment creates easy out for parents who are abusive, disorganized, or do not wish to do the hard work of building healthy and holistic family and community supports that foster recovery, inclusion, etc. Children are often the scapegoat for dysfunction family dynamics while parents often receive milk and cookies from consumer organizations that give short shrift to the importance of the environment in childhood development.

    That having been said, as a parent of an adult child who is diagnosed with a ‘severe persistent mental illness’ I do not wish our society to return to the days when every mental or emotional malady experienced by a child is blamed on the mother. It also has to be noted that often, even really good caring parents cannot obtain holistic care for a struggling child. When a child is failing in school, parents often have to make hard choices; it may be the IED, special education, or nothing. The only way to unlock services from the system is to obtain a diagnosis from the DSM.

    Most middle class families are covered by HMO’s which do not recognize modalities such as play therapy or art therapy. Coverage for talk therapy is severely limited (some states are better than others) and somatic care for children is virtually unheard of. Psychotherapy has gone underground and is now only accessible by the most privileged in our society. This is an injustice. WE need to make alliances with the licensing associations of every healing modality that promotes alternatives that ‘first do no harm’ and push for legislative changes in every state, targeting the state boards that oversees medical insurance rules.

    The difficulty of revolutionizing our mental health system, especially as it concerns early intervention for children, is the massive scale of the brainwashing that has been carried out. The increase in disability rates in families headed by individuals with college degrees show that higher education provides no inoculation against medical propaganda.

    The problem and the solutions are even more daunting. It seems that not only do we have to revolutionize the mental health system despite the massive resources possessed by big Pharma, we have to create deep, corollary changes in our education, foster care, and juvenile justice systems which are all in cahoots with this whole disability industrial complex. Personally, I think it would be easier to disassemble the military industrial complex, but I’m willing to try and do whatever small thing I can do in my community. Anyone care to join me? I live in Oregon.

    • Madman: I am all the way back across the country in WVa., but am experiencing much the same as you. Perhaps what Dr. Hickey’s article suggests is that educated parents are more not less susceptible to psychiatric propaganda. On a personal level, I have been dealing with psychiatry for 25 years. In my work life, I work as a youth worker at a foster home and as a substitute teacher at Job Corps and in the public schools. It is very common for our young people to reify their ADHD diagnosis. I also sense that the amount of medication that foster youth are exposed to has increased in the past couple of years. Any time I am transporting youth to therapy, I emphasize that it is their right to ask questions as well. Some youth sense their is something askew with the system of mental health diagnosis in this country, and sometimes this offers up the possibility for discussion and the partial lifting of the veil.

      • Chris:

        I’m glad you work with young adults. Having you to listen to their concerns is a great service. As for the description of the Hollywood show with input from NAMI, in popular culture we may see a slight uptick in the sophistication as it relates to the characterization of adults with in ‘schizophrenia’ and bi-polar as smart and functional, even sexy, but if screen writers rely on experts from NAMI to develop their characters, Good Lord, I can only imagine the nonsense that will result. I think I will take a pass on this and other fictional shows. You know, they didn’t even get the facts straight in the movie about John Nash’s life (starring Russell Crowe). Clearly, anyone who has read about John Nash knows that he manages his symptoms WITHOUT medication. Nonetheless, the screen writers distorted the truth and portrayed his character as someone who relies on medication. I wish the creatives in Hollywood would all come out of the closet for the sake of the next generation who have not been taught about the connection between madness and genius.

        • Mad Mom: I offer up the survey of popular culture as I suspect that it is a molder of public opinion. Back in the 1990s I recall that many cop shows had plots or subplots concerning the “mentally ill ” going off the reservation because they didn’t take their “meds.” This led to many people in society off-handedly making snide comments about the mentally ill being off their meds or somewhat more benignly it was used as a form of chiding of their friends. Another show which was cancelled was Black Box which also had a female lead who was also “bipolar.” In the political realm our new Republican Senator Capito, daughter of our defrocked governor, is in league with the much discussed, on this website, Congressman Tim Murphy. Basically, I try to keep an eye on as many aspects of our society that I can. As some one tagged with a “history of mental illness” rap and a resident of a stigmatized state-West Virginia-I think that this helps me to be non-judge mental toward other stigmatized and scapegoated groups in our culture. Also, thanks for responding.

      • “educated parents are more not less susceptible to psychiatric propaganda”
        If anything they are more because they are more inclined to believe in science or in this case psychiatry presenting itself as one.
        The other factor may be the focus on career and high expectations towards kids – in such an environment when the kids are in the grind mill from the get-go and the pressure is put on them to excel – that’s where the “mental illness” comes from.

    • Mad Mom: Speaking of NAMi, I guess this is the best place to interject this information also since it is the most recent post. I think it is paramount that we scrutinize psychiatry, especially as it plays out in popular culture, since that is how most people in our society develop their attitudes and beliefs about psychiatry, or other social concerns, for that matter. Homeland on Showtime stars Claire Danes as a “Bipolar” CIA agent who is now station chief in the US embassy in Islamabad. Most recently, a “traitor” in the employ of the Pakistan Security Agency-ISI-tinkered with her “meds” (chlorozipan sic). The story line was that a powerful hallucinigin was put in its place, leading her to capture by the ISI. I googled Homeland and Bipolar, and came up with a link to a link to an interview with the show’s writer, I believe, and a representative from NAMI. It seems the show relies heavily on the input from Kay Jamison who circulates in the rarefied air that is the Ivy League establishment. The shows producers also tap into the “expertise” of US intelligence officials-the show is actually a knock off of an Israeli TV drama. Earlier seasons portrait Iranian character in a very villainous light as the current season does to the Pakistani ISI. Also, keep in mind the feminist undercurrent to the plot as the protagonist navigates the male-dominated world of the intelligence apparatus.
      Also, on CSPAN Book TV his weekend, there is a lurid expose on life in a forensic mentally hospital in Napa. The psychiatrist who wrote the book and presents the story, is extremely over wrought with contradiction. Obstensivley, he wrote the book in order to advocate for “his patients” who are getting the “shit beat out of them” by their fellow patients, which I suppose are not his patients. The book store remote is full of hospital workers who chime in during the Q and A. And it should come as no surprise, that no “consumers” are in the audience. The psychiatrist,we are led to believe, is advocating for his patients, who at the same time clearly states that he can trust none of them as far as he can throw them. He even throws in a plug for the Christ Complex, when he asks but where other than such a place would Jesus do his work. Of course in the end, the program begs more questions than it answers.

  3. “There is no human problem psychiatry can’t make ten times worse.” So true, the high income neighborhood I worked in had the highest teen suicide rate in the nation by 2011, and I’m pretty certain all seven children who killed themselves were stigmatized and on psychiatric drugs. And, of course, the psychiatric community banned together to cover up their part in the suicides, and worked to increase psychiatric interventions to “reduce suicides.” Ten times worse is the truth, thanks again for speaking the truth, Philip.

    • I may be getting to be like a broken record on this topic…I apologize…I think these increased birth defects and the increases in autism are partly due to the dramatic increase in prescribed drug use by pregnant women…the New York Times just had an article about the plan to better identify drugs used by pregnant women because the average pregnant woman uses 3-5 prescribed drugs during her pregnancy…

      My son is on the Spectrum…and I took (half of the prescription) Phenergan for 5 months for severe morning sickness during my pregnancy with him…I feel that I was misinformed that this drug was the only course of action (when I found non-drug ways to get through the same morning sickness with my second and third pregnancies) . Morning sickness can be so severe that you end up in the hospital…which is what happened to me…but the drug should not have been so readily prescribed when there were many other options out there (IVs to keep one hydrated, full bed rest etc.) We must change our economic system to rein in the power of big business including Big Pharma…

      Thanks for sharing this study…alarming, but not surprising ….

      • Truth in Psychiatry and AxqiY,

        It is a huge increase; and the prescription drugs may be implicated. But what’s really surprising is that almost all the increase in prevalence occurred right at the end of the decade (2010-2011). Here are the prevalence figures (cases per 100,000) for the four time intervals:

        2001-2002 349
        2004-2005 345
        2007-2008 370
        2010-2011 434

        I’m not sure what to make of this.