Autism 299:00 Breaking the Code Part 2 by Beth Runion, RHIA, CMT

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 historical perspective
AutiSM 299.00: Breaking the code Part 2
This is the second article in the series “Autism 299.00: BREAKING THE CODE.” Vicki Martin, RN, and Sonja Hintz, RN, BSN, introduced this series in issue 33 of The Autism File.
By Beth Runion, RHIA, CMT hese articles advocate for the reclassification of autism, which is currently listed in the mental disorders chapter in the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) used in the United States. However, this discussion is important on a global level because this classification directly affects autism treatment and reimbursement. The following is a historical perspective on how this classification came to be. We will look at why the code 299.00 matters in today’s world with the growing rate of autism and try to provide some insight for change. We want to move toward a more appropriate categorization of autism into a medical diagnostic classification and to allow for appropriate statistical data and reimbursement based on autism and its many symptoms and manifestations. Historical Definition and Perspectives Autism currently is classified as a mental illness in the International Classification of Diseases (ICD) under the code 299.00, subclassified in the fifth chapter under “299 Psychoses with Origin Specific to Childhood.” As the mother of a child with autism and a health information professional, I am compelled to help sort through the maze of coding for autism and the multitude of manifestations and symptoms that go along with it. The following is a brief history
Beth Runion is a registered health information administrator and certified medical transcriptionist.  She serves as an application supervisor of coding and transcription in the Health Information Services department of St. Louis Children’s Hospital.
We want to move toward a more appropriate categorization of autism into a medical diagnostic classification
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of classification systems and categorization of autism as a mental illness. We start by reviewing the history of autism and coding in an effort to legitimize change in the classification of autism. Proper identification and classification of autism and the comorbid conditions that accompany it is imperative for providing appropriate care and education as well as to assure comparative and relative reimbursement. In 1943, Leo Kanner described his observations on 11 children (8 boys and 3 girls) between the ages of 2 and 8 years old and called their behavior “autism.” Twenty-eight years later in 1971, Kanner published a follow-up study in which he noted that he was pleased that within a year of the 1943 paper, dozens of books and articles had been written worldwide. However, he also “deplored” the fact that “autism” was not recognized as an independent entity in the psychiatric world, but rather a subclassification under schizophrenia, childhood type. Kanner was unhappy with the American Psychiatric Association’s subclassifications listing of “infantile autism” in the Diagnostic and Statistical Manual of Mental Disorders, Second Edition (DSM-II) (Neumärker, 2003). Nevertheless, these early findings led to the classification of autism in the DSM-II book. What is DSM and Why Does it Matter? DSM stands for the Diagnostic and Statistical Manual of Mental Disorders. The DSM is used
historical perspective 
by clinicians to help evaluate patients based on predefined diagnostic criteria that falls into categories of mental illness. Using these criteria has provided the method of diagnosing autism. The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) is currently being used in the United States. Per the American Psychiatric Association (APA), the DSM was developed by the U.S. Army and later modified by the Veterans Administration in order to better incorporate the outpatient presentations of World War II servicemen and their “reactions” to war. According to author Hannah Decker, American psychiatry from 1946 to 1974 was a time of moving away from biological (scientific) reasons for psychiatric problems, and a time for movement to psychological explanations (i.e., Freudian, nonscientific-type thinking). At that time, there were two types of thinking in psychiatry: those who followed scientific reasons for diagnosing patients and those called psychoanalysts who “postulated” etiologies (causes) for illness. Why does this matter now? This matters because, in 1974, there were psychoanalysts who heavily contributed to the writing of the ICD-9 in Geneva, Switzerland, despite the efforts and intent of the “scientific” psychiatric community to include as much legitimate information as possible. At that time, the Diagnostic and Statistical Manual of Mental Disorders, Third Edition was being formulated. Much has been written about the infighting among members of the DSM-III Task Force and psychiatric community concerning the content of the DSM-III. This is greatly detailed in the 1992 Kirk and Kutchins book The Selling of DSM. One of the quotes from the book is by the head of the DSM-III Task Force, Dr. Robert Spitzer, which states: “The reliability [of DSM-III] is not as good for the childhood categories, although again it is far better than it was for DSM-II.” Per Kirk and Kutchins, field trials and reliability studies performed failed to add up in DSM-III, which left the psychiatric and medical world with many concerns relative to validity and use of the criteria. Eventually, the DSM-III book was revised (DSM-III-R), but much controversy continued and development of DSM-IV was initiated. Currently, the DSM-IV-TR is the “official” classification scheme of mental disorders and is the most widely used. Its developers maintain the validity of DSM-IV-TR, touting scientific credibility, especially as opposed to previous versions of DSM. A DSM-V is in the works. However, many in the field still think the scientific aspect of the DSM is overstated (Poland, 2001). In fact, in his review of the DSM-IV Sourcebook, Dr. Jeffrey Poland concluded that DSM categories’ “lack of demonstrated construct and predictive validity” continues. Poland further states: “Categories in DSM-III-R, which were included in that edition without adequate evidence of validity or clinical utility, were largely retained in DSM-IV without any new or satisfactory evidence vindicating their original inclusion in the official diagnostic classificatory system. Although there are some discussions of validity issues in Volume 1 of the Sourcebook, these discussions are neither systematic nor deep.” Dr. Poland also states that the bottom line is that DSM-IV categories, at least those studied in volume 1 of the Sourcebook, have not been validated by scientific research. Yet they continue to inform not only current and future scientific research, but also numerous cultural practices (e.g., clinical, legal, educational, health care). Poland gives a similar review of the second volume of the Sourcebook, stating, “Throughout the volume there are repeated affirmations of the lack of relevant empirical research findings bearing on issues concerning the construct and predictive validity of the categories (i.e., their scientific meaningfulness.” In 2000, the APA published the Text Revision version of DSM-IV with the following statement ( “The primary goal of DSM-IV-TR was to maintain the currency of the DSM-IV text, which reflected the empirical literature up to 1992. Thus, most of the major changes in DSM-IV-TR were confined to the descriptive text. Changes were made to a handful of criteria sets in order to correct errors identified in DSM-IV. In addition, some of the diagnostic codes were changed to reflect updates to the International Classification of Diseases, Ninth Edition, Clinical Modification (ICD-9-CM) coding system adopted by the U.S. government.”
Dr. Poland also states that the bottom line is that DSM-IV categories, at least those studied in volume 1 of the Sourcebook, have not been validated by scientific research. Yet they continue to inform not only current and future scientific research, but also numerous cultural practices (e.g., clinical, legal, educational, health care). Poland gives a similar review of the second volume of the Sourcebook, stating, “Throughout the volume there are repeated affirmations of the lack of relevant empirical research findings bearing on issues concerning the construct and predictive validity of the categories (i.e., their scientific meaningfulness.”
 historical perspective
Diagnosis with an imperfect system leads to classification by an imperfect system! a “Glossary of Mental Disorders” was provided. The definition of autism, as per the World Health Organization 1975, is as follows (NCHS, 1978): Autism, infantile: A syndrome present from birth or beginning almost invariably in the first 30 months. Responses to auditory and sometimes to visual stimuli are abnormal, and there are usually severe problems in the understanding of spoken language. Speech is delayed and, if it develops, is characterized by echolalia, the reversal of pronouns, immature grammatical structure, and inability to use abstract terms. There is generally an impairment in the social use of both verbal and gestural language. Problems in social relationships are most severe before the age of five years and include an impairment in the development of eye-to-eye gaze, social attachments, and cooperative play. Ritualistic behavior is usual and may include abnormal routines, resistance to change, attachment to odd objects, and stereotyped patterns of play. The capacity for abstract or symbolic thought and for imaginative play is diminished. Intelligence ranges from severely subnormal to normal or above. Performance is usually better on tasks involving rote memory or visuospatial skills than on those requiring symbolic or linguistic skills. iCD as a Reimbursement tool The Health Insurance Portability and Accountability Act (HIPAA) changed the way health care providers and insurance companies do business. The U.S. Department of Health and Human Services (HHS) is in charge of assuring the HIPAA rules are followed. The rules of HIPAA are far too numerous to recount here, but we will note the basics and how the rules relate to using ICD for reimbursement. (Please note that physicians and other providers use a system called Current Procedural Terminology-4 or CPT-4 to code their charges. For simplification purposes, CPT-4 is not discussed here.) Title IV of the HIPAA statute is “Application and Enforcement of Group Health Plan Requirements” (McWay, 2008) and was written to help simplify exchange of electronic patient record information and billing practices between health care providers and insurance companies. So, under HIPAA, insurance companies that accept and process insurance claims electronically are only required to accept ICD-9-CM diagnosis codes. DSM-IV-TR codes are not required by HIPAA, which, therefore, causes the psychiatrist or psychologist to convert the DSM code into an ICD-9-CM code ( There are differences in
Diagnosis with an imperfect system leads to classification by an imperfect system!
DSM to iCD Classification systems started in the mid-1700s as a means to classify cause of death. Approximately 150 years later, the first International Classification of Diseases was formulated as a means of recording not just causes of death, but also disease processes (McWay, 2008). In 1948, the first World Health Assembly adopted regulations for the World Health Organization (WHO) including a tabular list defining the content of the diagnostic categories and an alphabetic index of diagnostic terms coded to the appropriate categories of the ICD-6. Representatives from around the world, including France, Australia, Canada, Mexico, and the United States, convened for the revision (WHO, 1949). Mental disorders were introduced for the first time in the ICD-6 with no mention of autism. It was not until the ICD-8 that the description of “early infantile autism” with the code 307.0 was introduced in the fifth chapter under mental disorders, subheading of “Psychosis Specific to Childhood.” Hospitals and ambulatory facilities in the United States used the International Classification of Diseases Adapted for Use in the United States Eighth Revision (ICDA8) from 1969 through 1978. However, in 1975, the World Health Organization reconvened in Geneva, Switzerland, for a ninth revision of the ICD. While the WHO adopted ICD-9, the United States adopted the use of the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM). The term “autism” was listed as 299.00 for the first time. In the ICD-9-CM,
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historical perspective 
Diabetes Manifestations
Hyperosmolality/fluid loss, electrolyte imbalance. Kidney Ophthalmic Neurological Peripheral, circulatory Other unspecified complications
Autism Manifestations
Nutritional/metabolic. Malabsorption (bloating, abnormal stools, bacteria in the gut). Imbalance of methylation cycle. Endocrine Ophthalmic Neurological, e.g., seizures, epilepsy, muscle weakness Heavy metals, autoimmune, allergies Speech delay, dietary
American Psychological Association Practice Organization. Covered Diagnoses & Crosswalk of DSM-IV Codes to ICD-9-CM Codes. APA. org. Retrieved October 2009, from insider/practice/pracmanage/ practicemanagement/dsm-9.html# American Psychiatric Association. Development of DSM-III. Retrieved October 7, 2009, from http://www. dsmiv.aspx Decker, Hannah S. How Kraepelinian was Kraepelin? How Kraepelinian are the neo-Kraepelinians? — from Emil Kraepelin to DSM-III. History of Psychiatry. Sep 2007; vol. 18:337-360. Kirk, SA and Kutchins, H. (1992). In A. de Gruyter, Ed. The Selling of DSM. The Rhetoric of Science in Ps. New York: Walter de Gruyter, Inc. McWay, JD, RHIA, DC. (2008). Today’s Health Information Management. Clifton Park, New York: Thomson Delmar Learning. National Center for Health Statistics (NCHS). (1978). The International Classification of Diseases, 9th Revision, Clinical Modification Vol. 1. (1st ed.). Ann Arbor, Michigan 48105: Commission on Professional and Hospital Activities. Neumärker, K. – J. Leo Kanner: His Years in Berlin, 1906-24. The Roots of Autistic Disorder. History of Psychiatry. 2003; 14:205-218. Poland, J. (2001). Mental Health. DSM-IV Sourcebook Volume 1. Retrieved October 27, 2009, from http://metapsychology. php?type=book&id=557 Poland, Ph.D., J. (2002). Health Policy & Advocacy. DSM-IV Volume 2 Sourcebook. Retrieved November 15, 2009, from http://www.mentalhelp. net/poc/view_doc. php?id=996&type=book&cn=74 Satcher, M.D., Ph.D., D. (1999). Financing and Managing Mental Health Care. History of Financing and he Roots of Inequality. Mental Health: A Report of the Surgeon General. Retrieved September 6, 2009, from library/mentalhealth/chapter6/ sec3.html World Health Organization (WHO). Classifications. International Classification of Diseases. History of ICD. Retrieved November 16, 2009. icd/en/
terminology; for example, 299.00 in the DSM-IV is listed as “autistic disorder,” whereas the ICD-9-CM description for code 299.00 is “infantile autism.” (Please see the following link for an overview of the crosswalk of codes. http://www.apapractice. org/apo/insider/practice/pracmanage/ practice_management/dsm-9.html#) So, how does this work? When a health care provider sees a patient, the provider documents a diagnosis based on the medical evaluation. The diagnosis is then matched to an ICD-9-CM code, which is submitted to the insurance company along with the date of service and other identifying information such as insurance number and date of birth. The insurance company reviews the claim and renders a judgment on payment. The insurance company then sends an explanation of benefits (EOB) to the insured and subsequently pays or denies the claim from the health care provider for services based on all codes and information submitted. Stigma of Mental Health and insurance A U.S. government Report of the Surgeon General from 1999, which is still commonly cited, details the history of inequality of financing and managing mental health care. The report states that private health insurance is typically more restrictive on mental health care coverage. Insurance companies typically impose higher deductibles and copayments, resulting in more out-of-pocket payments for mental health care treatment. This is because insurance providers fear that the high costs of covering the mentally ill will be catastrophic. Further, the Surgeon General’s report admits insurance companies often set lower annual or lifetime limits to protect themselves against costly claims thus leaving patients and their families exposed to much greater personal financial risks. (Sacher, 1999).
Advocating for Change I personally carry health insurance through my work, and I have witnessed firsthand the negative effects and bias associated with reimbursement of medical claims for autism-related problems. Change should come as a result of correctly classifying autism to the appropriate scientific and etiological category (e.g., neurological, autoimmune, etc.) Diagnosis and intervention are directly related to the availability of health care. Manifestations such as speech delay, motor and sensory problems, nutritional and metabolic issues, gut problems, autoimmunity, and allergies are just some of the areas where there are symptoms among persons diagnosed with autism. Let’s compare type 1 diabetes (juvenile type) and its manifestations to autism (see above). Juvenile diabetes and autism both have medical manifestations; therefore, it would stand to reason that the medical manifestations exhibited by individuals with autism should also be treated and covered by insurance. the time to advocate for change to move away from the 299.00 mental disorders classification is now! We would like to hear about the experiences of parents in obtaining appropriate medical care for their children. if you have a comment or a point of view, please contact Sonja, Vicki, and Beth at Helpful Web sites for Parents: Talk About Curing Autism (TACA) http://www. ins_reimbursement_tips.htm The National Conference of State Legislatures: