eLetters to:

ARTICLES: Michael D. Kogan, Stephen J. Blumberg, Laura A. Schieve, Coleen A. Boyle, James M. Perrin, Reem M. Ghandour, Gopal K. Singh, Bonnie B. Strickland, Edwin Trevathan, and Peter C. van Dyck Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007 Pediatrics 2009; 124: 1395-1403 [Abstract] [Full text] [PDF]

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eLetters published:

Parents who beg educators for the autism diagnosis

Cheryl R. Pace   (9 October 2009)

Other possibilities

Tim P Earnest   (9 October 2009)

Limits of Survey Methodology to Assess the Prevalence of Autism Spectrum Disorders

Stephen J. Sheinkopf, PhD   (11 October 2009)

Is it the Chicken or the Egg?

VIVEK PRASAD   (18 October 2009)

Aluminium and Autism - finally in the same issue of Pediatrics

Paul N Thomas   (17 November 2009)

Parents who beg educators for the autism diagnosis 9 October 2009
Cheryl R. Pace, Exceptional Student Services Director adjunct professor Send letter to journal: Re: Parents who beg educators for the autism diagnosis cheryl.pace{at}srpmic-ed.org Cheryl R. Pace	Dear Authors, I am curious as to if your survey can pick out those parents who are going to medical doctors and educational professionals in public school to request that their child be diagnosed with the autism label. This is happening often in the public schools. Since autism is also an educational diagnosis as well as a medical diagnosis, as an evaluator and part of an educational evaluation team I have witnessed many parents asking that their child receive the autism diagnosis because they can then get life-time medical insurance for the condition. I have seen parents study the symptoms of autism and tell their child to act certain ways so that they do look like they have autism. When completing the CARS or GARS or other checklists, they know the right answers to make their child look autistic. I have also often witnessed medical doctors providing a parent with the autism diagnosis if the parent is insistent. In these cases, it is usually the same medical doctor who easily will give the diagnosis. It is my hope that the medical field becomes aware that these scenerios are happening, not just in the state I live in but in other states. Conflict of Interest: None declared
Other possibilities 9 October 2009
Tim P Earnest, Pediatric psychiatrist Woodcreek Healthcare Send letter to journal: Re: Other possibilities dawnmome{at}comcast.net Tim P Earnest	While the rising prevalence of autistic spectrum disorders could be partially explained by "...more inclusive survey questions, increased population awareness, and improved screening and identification by providers...", it is our responsibility as providers and scientists to make sure it may not also be due to rising medical issues that we can alleviate. Conflict of Interest: None declared
Limits of Survey Methodology to Assess the Prevalence of Autism Spectrum Disorders 11 October 2009
Stephen J. Sheinkopf, PhD, Assistant Professor of Psychiatry & Pediatrics Brown Alpert Medical School Send letter to journal: Re: Limits of Survey Methodology to Assess the Prevalence of Autism Spectrum Disorders Stephen_Sheinkopf{at}brown.edu Stephen J. Sheinkopf, PhD	To the editor, Kogan et al. [1] reported prevalence rates of autism spectrum disorders (ASD’s) to be approximately 110 per 10,000 overall (173 per 10,000 for boys) using parent responses to a telephone survey as part of the 2007 National Survey of Children’s Health (NSCH). These findings are quite provocative and underscore observations that ASD’s are diagnosed at a far higher rate than in the past. However, the field should be very cautious in using such findings to estimate the prevalence of ASD because of the form of the survey question and the lack of case confirmation. The NSCH asked parents whether “a doctor or other health care provider ever told you that [your child] had the condition, even if he/she does not have the condition now…” The question did not ask if the parent was told that the child had a diagnosis or was diagnosed with ASD. Also, what is meant by “health care provider?” Thus, a comment by anyone that the parent sees as a health care provider such as, “Your child may have autism,” even in the context of a recommendation for an evaluation, could be interpreted as “yes” to this question. The vagueness of this question makes it impossible to estimate the accuracy of the results. The estimated point prevalence of children described as having “Mild” ASD in the survey suggests that a large proportion of children identified would at some point have received a diagnosis of PDD-NOS or, more generally, “autism spectrum disorder”. Because DSM-IV offers little specific guidance on appropriate symptomatic thresholds for PDD-NOS, this increases the subjective nature of the diagnosis and results in wide variation in diagnostic practice. There has clearly been a significant surge in awareness of and interest in ASDs in recent years. And for good reason, as these disorders are clearly far more common than was once thought, and thus represent a very significant public health challenge. However, it is precisely because of this high interest, and the highly charged nature of debate about the changing estimates of prevalence, that care must be taken to base estimates of prevalence on rigorous methodology. The authors, while noting the limitations inherent in their method, nonetheless imply that the impact of these limitations is lessened because 1) their prevalence estimates are similar to previous surveys, 2) the demographic distributions are similar to findings from other CDC surveillance efforts, and 3) a past finding showing good sensitivity of parental report of various diagnoses in special education children. However, the observation that studies with similar methods (and thus similar weaknesses) show comparable results does not lessen the impact of these limitations. Further, other CDC surveillance reports have not yet used direct case confirmation, instead extracting information from medical and educational records. Finally, the observation that parental report is sensitive to diagnosis does not fully address the limitations of this study, which are as likely to result in problems of specificity. Future research may very well indicate prevalence rates of ASD’s in the range of 1%, although, as with disorders such as schizophrenia [2], estimates will depend on the broadness of case definitions as well as the methods of ascertainment and case confirmation (see Baird et al. [3] for an example of methodological effects on prevalence estimation in autism). The methods reported by Kogan et al. make it impossible to adequately judge the accuracy of their findings. The authors do not provide evidence for the validity of the questions used from the NSCH, and it is therefore not clear that parental responses accurately reflect actual diagnoses. While large-scale direct case confirmation would not have been practical, it may have been feasible to assess the accuracy of surveys by conducting a relatively small-scale validity study to test the correspondence of survey results with formal diagnostic evaluation. The authors do acknowledge that “Data on the validity of parental report of developmental conditions are limited.” This is a critical limitation. It would seem prudent to directly test the accuracy of parental report prior to publication of such a high impact paper. Going forward, firm estimates of the prevalence of ASD’s should await findings from studies with direct case confirmation, and/or those that assess the reliability and validity of more indirect methods of ascertainment. References: 1. Kogan, M.D., et al., Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007. Pediatrics, 2009. 2. van Os, J. and S. Kapur, Schizophrenia. Lancet, 2009. 374(9690): p. 635- 45. 3. Baird, G., et al., Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 2006. 368(9531): p. 210-5. Conflict of Interest: None declared
Is it the Chicken or the Egg? 18 October 2009
VIVEK PRASAD, GENERAL PSYCHIATRY RESIDENT INDIANA UNIVERSITY Send letter to journal: Re: Is it the Chicken or the Egg? VIPRASAD{at}IUPUI.EDU VIVEK PRASAD	It is an interesting notion to question whether this rise in incidence is the result of more accurate diagnosis or more a result of misallocated health policy funding for expensive services. Usually such studies are utilized to direct policy. For example, the Centers for Disease Control and Prevention estimated New Jersey’s prevalence at 1:94 children in 2007. Later in the year, the state legislature included in its package of bills, one to provide millions of dollars for research and regional treatment centers. Autism spectrum disorders (ASD) along with cerebral palsy, intellectual disability, hearing loss, and vision impairment, are included in the diverse group of developmental disabilities that result in mental and physical impairments that limit independent living. Fortunately there are Medicaid waivers for children diagnosed with autism and other developmental disabilities requiring high levels of care. Such services include applied behavioral analysis, adult day services and foster care, behavioral support, community transition, family and caregiver training, specialized medical equipment and supplies, respite care, environmental modifications, assistive technology, residential habilitation, day services, personal emergency response system, and therapeutic services (e.g., speech, physical).1 When laws require coverage for therapeutic services for ASD and developmental disabilities, there may be a clouding of the diagnostic picture. Children may be diagnosed with autism spectrum disorders and other developmental disabilities in order to maintain eligibility for necessary behavioral interventions. Per the Autism Society of America, the lifetime cost of caring for a child with autism is $3.5 million to $5 million. With such costs, it should not be a wonder as to why more has to be done for every child’s health care. Childrens’ diagnoses should not be changed in order to obtain services. For support and services, it has to be across the board. Afterall, it is rising water that floats all boats. 1. Medicaid Waivers. Accessed online: http://www.in.gov/fssa/ompp/2549.htm on 10/18/09. Conflict of Interest: None declared
Aluminium and Autism - finally in the same issue of Pediatrics 17 November 2009
Paul N Thomas, Pediatrician Integrative Pediatrics Send letter to journal: Re: Aluminium and Autism - finally in the same issue of Pediatrics Paulthomasmd{at}aol.com Paul N Thomas	Autism was 1 - 2 per 10,000 in the early 1980's when I trained. We have seen the prevalence rise to 1:650 then 1:150 and now 1:91. When we got the mercury out of the vaccines in 2001 there was no change and in fact rates have continued to rise. Alas we moved the Hep B vaccine around that time from teens to newborns. Many Vaccines have a lot of aluminium (eg 330 micrograms in most DTaP's, 250 micrograms in the Hep B and Hep A etc.). The November issue has the article on Aluminium in preterm infants and later bone health. In this article there is mention of the FDA recommended limit of aluminium exposure to <5 micrograms/Kg per day. Clearly our Hep B vaccines in newborns exceed this exposure ten-fold or more. Is it not time we re-consider the routine Hep B vaccine to infants whose mothers are hep B - negative and or/immune and have no risk factors? Most babies in my practice are not sexually active or using IV drugs. The precuationary principle should be sufficient to prevent us from routinely injecting the known neurotoxin aluminium into every baby in this country. Conflict of Interest: None declared