 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 of classification systems and categorization of

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
20 • THE AUTISM FILE USA 34 2010 REPRINTED WITH PERMISSION © THE AUTISM FILE
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
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
www.autismfile.com

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
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historical perspective 
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. Dr. Poland
Currently, the DSM-IV-TR is the “official”
also states that the
classification scheme of mental disorders and is
the most widely used. Its developers maintain bottom line is that
the validity of DSM-IV-TR, touting scientific DSM-IV categories,
credibility, especially as opposed to previous
versions of DSM. A DSM-V is in the works. at least those studied
However, many in the field still think the scientific in volume 1 of the
aspect of the DSM is overstated (Poland, 2001). In
fact, in his review of the DSM-IV Sourcebook, Dr.
Sourcebook, have not
Jeffrey Poland concluded that DSM categories’ been validated by
“lack of demonstrated construct and predictive scientific research.
validity” continues. Poland further states:
Yet they continue to
“Categories in DSM-III-R, which were inform not only current
included in that edition without adequate
evidence of validity or clinical utility, were and future scientific
largely retained in DSM-IV without any new research, but also
or satisfactory evidence vindicating their
numerous cultural
original inclusion in the official diagnostic
classificatory system. Although there are practices (e.g., clinical,
some discussions of validity issues in Volume legal, educational,
1 of the Sourcebook, these discussions are
neither systematic nor deep.” health care). Poland
gives a similar review
Dr. Poland also states that the bottom line is
that DSM-IV categories, at least those studied
of the second volume
in volume 1 of the Sourcebook, have not been of the Sourcebook,
validated by scientific research. Yet they continue stating, “Throughout
to inform not only current and future scientific
research, but also numerous cultural practices the volume there are
(e.g., clinical, legal, educational, health care). repeated affirmations
Poland gives a similar review of the second
volume of the Sourcebook, stating, “Throughout of the lack of relevant
the volume there are repeated affirmations of empirical research
the lack of relevant empirical research findings
findings bearing on
bearing on issues concerning the construct and
predictive validity of the categories (i.e., their issues concerning
scientific meaningfulness.” the construct and
In 2000, the APA published the Text Revision
version of DSM-IV with the following statement predictive validity
(APA.org): of the categories
“The primary goal of DSM-IV-TR was to
(i.e., their scientific
maintain the currency of the DSM-IV text, meaningfulness.”
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.”
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 historical perspective
Diagnosis with an imperfect system leads
to classification by an imperfect system!
Diagnosis DSM to ICD
with an imperfect Classification systems started in the mid-1700s as
a means to classify cause of death. Approximately
system leads to
150 years later, the first International Classification
classification by an of Diseases was formulated as a means of
imperfect system! 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 (ICDA-
8) 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,
22 • THE AUTISM FILE USA 34 2010 REPRINTED WITH PERMISSION © THE AUTISM FILE
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 (APA.org). There are differences in
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 historical perspective 

References
Diabetes Manifestations Autism Manifestations American Psychological Association
Practice Organization. Covered
Diagnoses & Crosswalk of DSM-IV
Hyperosmolality/fluid loss, Nutritional/metabolic. Malabsorption Codes to ICD-9-CM Codes. APA.
electrolyte imbalance. (bloating, abnormal stools, bacteria in the org. Retrieved October 2009, from
http://www.apapractice.org/apo/
gut). Imbalance of methylation cycle. insider/practice/pracmanage/
practicemanagement/dsm-9.html#
Kidney Endocrine
American Psychiatric Association.
Ophthalmic Ophthalmic Development of DSM-III. Retrieved
October 7, 2009, from http://www.
psych.org/mainmenu/research/
Neurological Neurological, e.g., seizures, epilepsy, dsmiv.aspx
muscle weakness Decker, Hannah S. How Kraepelinian
was Kraepelin? How Kraepelinian
Peripheral, circulatory Heavy metals, autoimmune, allergies are the neo-Kraepelinians? — from
Emil Kraepelin to DSM-III. History of
Other unspecified Speech delay, dietary Psychiatry. Sep 2007; vol. 18:337-360.
complications Kirk, SA and Kutchins, H. (1992). In A.
de Gruyter, Ed. The Selling of DSM. The
Rhetoric of Science in Ps. New York:
terminology; for example, 299.00 in the DSM-IV is Advocating for Change Walter de Gruyter, Inc.
listed as “autistic disorder,” whereas the ICD-9-CM I personally carry health insurance through my McWay, JD, RHIA, DC. (2008). Today’s
description for code 299.00 is “infantile autism.” work, and I have witnessed firsthand the negative Health Information Management.
(Please see the following link for an overview of effects and bias associated with reimbursement Clifton Park, New York: Thomson
the crosswalk of codes. http://www.apapractice. of medical claims for autism-related problems. Delmar Learning.
org/apo/insider/practice/pracmanage/ Change should come as a result of correctly National Center for Health Statistics
practice_management/dsm-9.html#) classifying autism to the appropriate scientific (NCHS). (1978). The International
So, how does this work? When a health care and etiological category (e.g., neurological, Classification of Diseases, 9th Revision,
Clinical Modification Vol. 1. (1st
provider sees a patient, the provider documents autoimmune, etc.) Diagnosis and intervention ed.). Ann Arbor, Michigan 48105:
a diagnosis based on the medical evaluation. The are directly related to the availability of Commission on Professional and
diagnosis is then matched to an ICD-9-CM code, health care. Manifestations such as speech delay, Hospital Activities.
which is submitted to the insurance company motor and sensory problems, nutritional and Neumärker, K. – J. Leo Kanner: His
along with the date of service and other metabolic issues, gut problems, autoimmunity, Years in Berlin, 1906-24. The Roots of
identifying information such as insurance and allergies are just some of the areas where Autistic Disorder. History of Psychiatry.
2003; 14:205-218.
number and date of birth. The insurance there are symptoms among persons diagnosed
company reviews the claim and renders a with autism. Let’s compare type 1 diabetes Poland, J. (2001). Mental Health.
DSM-IV Sourcebook Volume 1.
judgment on payment. The insurance company (juvenile type) and its manifestations to autism
metapsychology.mentalhelp.net.
then sends an explanation of benefits (EOB) to (see above). Juvenile diabetes and autism both Retrieved October 27, 2009, from
the insured and subsequently pays or denies the have medical manifestations; therefore, it would http://metapsychology.
claim from the health care provider for services stand to reason that the medical manifestations mentalhelp.net/poc/view_doc.
php?type=book&id=557
based on all codes and information submitted. exhibited by individuals with autism should also
be treated and covered by insurance. Poland, Ph.D., J. (2002). Health
Stigma of Mental Health and Insurance Policy & Advocacy. DSM-IV Volume
2 Sourcebook. MentalHelp.net.
A U.S. government Report of the Surgeon General The time to advocate for change to move Retrieved November 15, 2009, from
from 1999, which is still commonly cited, away from the 299.00 mental disorders http://www.mentalhelp.
details the history of inequality of financing classification is now! net/poc/view_doc.
and managing mental health care. The report php?id=996&type=book&cn=74
states that private health insurance is typically We would like to hear about the Satcher, M.D., Ph.D., D. (1999).
more restrictive on mental health care coverage. experiences of parents in obtaining Financing and Managing Mental
Health Care. History of Financing and
Insurance companies typically impose higher appropriate medical care for their children. he Roots of Inequality. Mental Health:
deductibles and copayments, resulting in more If you have a comment or a point of view, A Report of the Surgeon General.
out-of-pocket payments for mental health care please contact Sonja, Vicki, and Beth at Retrieved September 6, 2009, from
treatment. This is because insurance providers autismbreakingthecode@yahoo.com. http://www.surgeongeneral.gov/
library/mentalhealth/chapter6/
fear that the high costs of covering the mentally sec3.html
ill will be catastrophic. Further, the Surgeon Helpful Web sites for Parents:
World Health Organization (WHO).
General’s report admits insurance companies Talk About Curing Autism (TACA) http://www. Classifications. International
often set lower annual or lifetime limits to protect talkaboutcuringautism.org/resources/health_ Classification of Diseases. History of
themselves against costly claims thus leaving ins_reimbursement_tips.htm ICD. Retrieved November 16, 2009.
patients and their families exposed to much The National Conference of State Legislatures: http://www.who.int/classifications/
icd/en/
greater personal financial risks. (Sacher, 1999). http://www.ncsl.org/default.aspx?tabid=18246
www.autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE THE AUTISM FILE USA 34 2010 • 23