DEVELOPMENTAL CONDITIONS: The New World of Childhood Disability

Rodney Erwin, MD

Children with developmental conditions experience daily social and emotional defeats from their inability to regulate their minds and bodies in an acceptable way. Delays in speech isolate and frustrate children. Learning disabilities can serve to make the natural human instinct of curiosity and learning more of a burden and challenge than a life-giving joy. Depression deadens the vitality of youthful energy and excitement, and anxiety can make going to play soccer with friends a terrifying experience. Kids with autism spectrum disorders see the world through very different lenses than the rest of us, and they fight constantly to communicate with a world that does not and may never speak their language.

Mental health and developmental conditions now surpass physical conditions as the top five leading causes of disability in children in the United States.[1] According to data from the 2009 National Health Interview Survey, 7.7% of children under the age of 18 had some kind of limitation that prevented them from engaging in their usual activities.[2] The top five disabilities are speech problems; learning disability; attention deficit hyperactivity disorder (ADHD); other emotional, mental, and behavioral problems; and other developmental problems. Asthma or breathing problems came in sixth.

“This news is definitely not surprising,” observes Dr. Nelson Branco, a pediatrician at Tamalpais Pediatrics in Greenbrae and Novato. He says there has been a growing discussion in pediatrics about the “new morbidities” over the past decade, as behavioral and developmental issues have loomed ever larger. Parents have become much more educated and aware of developmental diagnoses, and the training of pediatricians has shifted to include more developmental surveillance and increased use of validated screening tools for mental and developmental conditions. As a result, many more children are being diagnosed with developmental conditions that may formerly have been overlooked, misunderstood or unaddressed.

Many factors are undoubtedly contributing to the increasing prevalence of mental health and developmental disabilities in children. Studies have tried to separate out the role of improved detection and screening for these disabilities, as well as changes in diagnostic criteria and thresholds for diagnoses. One study, for example, revealed that a family’s social proximity to another family with an autistic child significantly increased the likelihood of the first family’s child being diagnosed with an autism spectrum disorder (ASD).[3] The authors found that a child who lives within 250 meters of another child with autism is 42% more likely to be diagnosed with autism than a child living farther away. Living 250-500 meters away reduced the likelihood to 22%. The study also showed that ASD diagnoses obeyed the demarcations of school districts, supporting the hypothesis that school and parental knowledge of ASD led to higher rates of diagnosis.

Detection and screening factors alone, however, cannot explain the increase in mental health and developmental disabilities in children. Much has been made, and rightfully so, of the astounding increase in ASDs during the past two decades. The rate of autism diagnosis in California of children younger than five years, for example, increased from 6.2 per 10,000 births in 1990 to 42.5 in 2001.[4] The CDC now estimates that 1 in 88 children in the United States has an ASD, and the statistics are even more sobering for the prevalence of ADHD: almost 1 in 10.[5,6] Data from the National Health Interview Survey mentioned above show a fourfold increase in the prevalence of childhood disability overall in the past 50 years.[2]

Evidence is also mounting with regard to genetic and environmental influences in the increasing rates of developmental disabilities. Genetic and twins studies in ASDs are increasingly supporting the idea that there is an as-yet-unidentified environmental component to the development of these disorders. One recent study showed a statistically significant association between the risk for an ASD diagnosis and the distance from power plant emissions of mercury.[7] Several other environmental toxins have been linked to developmental conditions in children. Prenatal exposure to tobacco, for instance, more than doubles the likelihood of an ADHD diagnosis.[8] If children were also exposed to lead and tobacco, the likelihood of having ADHD goes to eight times that of children who had neither exposure. Exposure to organophosphate pesticides, mercury and polychlorinated biphenyls has also been associated with increased risk for ADHD.[9]

Identifying these associations raises some hope about eventually developing more effective prevention of developmental conditions in children. Preventive measures are especially important given the impact that mental health and developmental disabilities have on the future of children and their families. Research shows that childhood mental health difficulties have a much more profound negative effect on several critical adult outcomes than physical health problems. Adults who had childhood mental illness end up with fewer educational opportunities, fewer weeks worked in a year, and lower individual and family income.[10] Having a mental health diagnosis as a child is associated with a 37% decline in family income as an adult, which is three times more than the expected decline in income from a childhood physical health problem.

The future impacts of childhood mental health and developmental disabilities are staggering when one considers the increasing prevalence of these conditions. Perhaps even more important, there is a vital need for adequate assessment and effective treatments and support. The very nature of these conditions demands coordinated and comprehensive care in an effort to involve the affected child, families, schools and communities in a truly biopsychosocial medical approach.

Relative to other communities throughout the country, Marin and Sonoma counties have an abundance of resources, including child and adolescent psychiatrists, neuropsychologists, occupational and speech therapists, educational specialists, and student/family advocates. Nonetheless, many local children are unable to access these resources because they are too expensive, especially on a chronic basis.

There is a significant risk that the availability of services and treatment will only get worse in the coming years. The California Legislature and Gov. Jerry Brown have agreed to eliminate the Healthy Families program by next September, at which time the 863,000 California children enrolled in the program will be transitioned to Medi-Cal. This transition will further limit access to mental health care for children. Children in Healthy Families, for example, are currently able to receive mental health care at Kaiser Permanente. Because Kaiser does not have a contract to provide these services through Medi-Cal, those families will have to find providers in the community who accept Medi-Cal patients. Many of these providers work in county mental health systems, which themselves are struggling to survive under further budget cuts. School districts are also facing overwhelming financial pressures and are cutting psychological and support services.

The silver lining to this grim situation might be greater attention to the ongoing mental health needs of children. Over the past decade, physicians in pediatrics and certainly in child and adolescent psychiatry have observed the increased frequency and intensity of their young patients’ mental health and developmental challenges, and they have worked diligently to develop better identification and treatment. The needs of these children, however, now require a much more systematic and broad-scale approach that relies on integration and coordination of services with a multitude of various medical providers and schools. Developing basic access to ongoing treatment is critical, even in Marin and Sonoma counties, with their wealth of resources.

Continuing to educate and inform parents, teachers, health care providers and the general public about these issues is vital to transforming the still pervasive negative perceptions of mental health and developmental issues. Similar to children who use inhalers before PE class, or wear glasses, or use a ramp to enter school, it is imperative for children with developmental conditions to understand their situation and find ways to overcome their disability. This effort will require the destigmatization of psychiatric and developmental disorders. Children with ADHD who continue to get into trouble in school are not just defiant or obnoxious. The little girl with autism who is melting down in the grocery store in not just badly parented. The child who refuses to read or write because it is such an incredible challenge is not stupid or lazy. All these children have medical and developmental conditions that deserve support, understanding and effective treatment.

---

Dr. Erwin is a child & adolescent psychiatrist at Kaiser Permanente in Petaluma.

Email: rodney.j.erwin@kp.org

References

1. Halfon N, et al, “The changing landscape of disability in childhood,” Future Child, 22:13-42 (2012).

2. U.S. Dept. of Health & Human Services, et al, “National Health Interview Survey, 2009,” www.ipcsr.umich.edu (2010).

3. Liu KY, et al, “Social influence and the autism epidemic,” Am J Sociology, 115:1387-1434 (2010).

4. Hertz-Picciotto, et al, “Rise in autism and the role of age at diagnosis,” Epidemiology, 20:84-90 (2009).

5. CDC, “Prevalence of Autism Spectrum Disorders,” Surveillance Summaries, 61(SS03):1-19 (2012).

6. Froehlich TE, et al, “Prevalence, recognition, and treatment of attention-deficit/hyperactivity disorder in a national sample of U.S. children,” Arch Ped & Ado Med, 161:857-864 (2007).

7. Palmer RF, et al, “Environmental mercury release, special education rates, and autism disorder,” Health Place, 12:203-209 (2006).

8. Froehlich TE, et al, “Association of tobacco and lead exposures with attention-deficit/hyperactivity disorder,” Pediatrics, 124:e1054-63 (2009).

9. Bouchard MF, et al, “Attention-deficit/hyperactivity disorder and urinary metabolites of organophosphate pesticides,” Pediatrics 125(6):e1270-77 (2010)

10. Delaney L, et al, “Childhood health: Trends and consequences over the life course,” Future of Children, 22:43-63 (2012).