Download AutiSM 299.00: Breaking the code Part 2

 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
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 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
REPRINTED WITH PERMISSION © THE AUTISM FILE
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
www.autismfile.com
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
www.autismfile.com
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
(APA.org):
“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.”
REPRINTED WITH PERMISSION © THE AUTISM FILE 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.”
THE AUTISM FILE USA 34 2010 •
21
 historical perspective
Diagnosis with an imperfect system leads
to classification by an imperfect system!
Diagnosis
with an imperfect
system leads to
classification by an
imperfect system!
22 • THE AUTISM FILE USA 34 2010 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,
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
www.autismfile.com
historical perspective 
Diabetes Manifestations
Autism Manifestations
Hyperosmolality/fluid loss,
electrolyte imbalance.
Nutritional/metabolic. Malabsorption
(bloating, abnormal stools, bacteria in the
gut). Imbalance of methylation cycle.
Kidney
Endocrine
Ophthalmic
Ophthalmic
Neurological
Neurological, e.g., seizures, epilepsy,
muscle weakness
Peripheral, circulatory
Heavy metals, autoimmune, allergies
Other unspecified
complications
Speech delay, dietary
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).
www.autismfile.com
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
[email protected].
Helpful Web sites for Parents:
Talk About Curing Autism (TACA) http://www.
talkaboutcuringautism.org/resources/health_
ins_reimbursement_tips.htm
The National Conference of State Legislatures:
http://www.ncsl.org/default.aspx?tabid=18246
REPRINTED WITH PERMISSION © THE AUTISM FILE References
American Psychological Association
Practice Organization. Covered
Diagnoses & Crosswalk of DSM-IV
Codes to ICD-9-CM Codes. APA.
org. Retrieved October 2009, from
http://www.apapractice.org/apo/
insider/practice/pracmanage/
practicemanagement/dsm-9.html#
American Psychiatric Association.
Development of DSM-III. Retrieved
October 7, 2009, from http://www.
psych.org/mainmenu/research/
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.
metapsychology.mentalhelp.net.
Retrieved October 27, 2009, from
http://metapsychology.
mentalhelp.net/poc/view_doc.
php?type=book&id=557
Poland, Ph.D., J. (2002). Health
Policy & Advocacy. DSM-IV Volume
2 Sourcebook. MentalHelp.net.
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
http://www.surgeongeneral.gov/
library/mentalhealth/chapter6/
sec3.html
World Health Organization (WHO).
Classifications. International
Classification of Diseases. History of
ICD. Retrieved November 16, 2009.
http://www.who.int/classifications/
icd/en/
THE AUTISM FILE USA 34 2010 •
23