BIOMEDICAL

Autism 299.00:
Breaking the code
By Vicki Martin, RN and Sonja Hintz, RN

Paradigm Shift: Mental or Medical?

Vicki Martin, RN (above), is the parent of a 13-year-old child with
autism. She graduated from Rockland Community College Nursing
Program in 1981 and spent the majority of her early nursing career
specializing in oncology. She has a BA in International Relations from
Marymount Manhattan College and is interested in human rights
issues, especially as it pertains to people affected by autism. Vicki
has used the Defeat Autism Now! approach for over twelve years and
specializes in helping parents negotiate the maze of available options
to choose the most effective autism treatments. She is certified in
multiple educational interventions for spectrum disorders and is
a strong advocate for all individuals with autism, especially those
more severely affected. Her own daughter, Julia, who is nonverbal,
recently found her “voice” by using Soma®RPM (Rapid Prompting
Method), and her health is greatly improved as a result of biomedical
interventions.
Sonja Hintz, RN, BSN (right), has worked with children with
disabilities since the age of 12. When she was 16 years old, she
began working in group homes as a residential counselor for five
years. In 1988, Sonja graduated from Marquette University’s nursing
school. After graduating, Sonja worked as a public health nurse, a
psychiatric nurse, and a neonatal intensive care nurse. With the birth
of her second child, Sonja was compelled
to reevaluate her traditionally-based
medical paradigms to meet the needs of
her son, who was on the autism spectrum
by the age of 3. Through the use of a
therapeutic diet, homeopathy, herbs,
vitamins, essential oils, and chelation
in addition to many other therapies, he
recovered. For the last ten years, she
has applied what she has learned to help
other children improve their quality of
life.
We would like to hear about the experiences of other parents in
obtaining appropriate medical care for their children. We would like
to know about any organizations that are working on this important
issue. In future articles, we will address how the coding of autism
affects reimbursement rates, the politics of expanding autism as a
medical and behavioral disorder, and how research is affected by
DSM-IV psychiatric disorders versus ICD9 medical disorders. We
welcome your suggestions for future topics to be explored. Please
email us at autismbreakingthecode@yahoo.com.

8 THE AUTISM FILE | www.autismfile.com | info@autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE ISSUE 33 2009
T
his article is the first in a series
about two nurses’ experiences
seeking treatment for their children
with autism. The goal of this series is
advocating for the reclassification of
autism as a medical disorder. Autism
needs to be seen accurately as a disease
that has biological underpinnings
that contribute to the behavioral and
cognitive functioning of the individual
with the disease. The Diagnostic and
Statistical Manual of Mental Disorders,
Fourth Edition, Text Revision (DSM-
IV-TR) defines autism as a behavioral
disorder. Autism, as a mental health
disorder, is conceptualized as a set
of behaviors to be modified and/or
extinguished. When autism is defined
strictly as a mental health disorder, it
implies that a general medical condition
does not exist. We must substantiate
the need for a paradigm shift; autism
is best understood and treated when
we move away from a mental health
model and instead embrace a multi-
system disease model that affects each
individual differently. Redefining autism
as a medical disorder will allow for a
continuum of care, better treatment,
more accessible insurance and Medicaid
reimbursements for medical care, and
more aggressive research.
Currently, there exists a flurry of
opposition to viewing autism as a disease.
It is not our intention to be disrespectful
to a community of individuals who want
to be accepted for their neurodiversity.
We respect the autism rights movement
led by those on the spectrum themselves.
It is understandable that people who
clearly do not have a developmental
disability or who do not view themselves
as “sick” do not want this disorder to be
seen as a disease. However, other mental
health symptoms, such as obsessive
and compulsive behavior and tics, have
benefited from a medical evaluation for
origins related to Streptococcus or other
infections (see pediatric autoimmune
neuropsychiatric disorders associated
with streptococcal infections [PANDAS]
and pediatric infection-triggered
autoimmune neuropsychiatric disorders
[PITANDS]). In addition, anxiety disorders
are also evaluated for underlying medical
conditions, such as high blood pressure,
ISSUE 33 2009 REPRINTED WITH PERMISSION © THE AUTISM FILE info@autismfile.com | www.autismfile.com | THE AUTISM FILE
The right to receive medical treatment and evaluation does
not detract from the value or the individuality of the person
diagnosed with autism.
congestive heart failure, and vitamin B12
deficiency. The right to receive medical
treatment and evaluation does not detract
from the value or the individuality of the
person diagnosed with autism. Rather,
their disorder is maintained in a medical
Vicki’s Story
Speaking as a parent of a nonverbal
child: yes – I want a cure! So does my
child who desperately wants to speak
with her mouth and not just with her
communication device. Wanting medical
treatment for a child’s disease is natural.
I do not see my daughter Julia’s lack
of language and most of her other
autistic symptoms as a difference or as
“neurodiversity,” but rather as a severe
brain problem that one day, I hope, will
be understood and cured.
One major issue faced by families
caring for high needs children involves
decisions surrounding hospitalization
when a child is in crisis. I will illustrate
this point by sharing a very painful time
in our family’s life when Julia was 8 years
old. The statements below are taken
directly from my appeal letter to my
insurance company to request coverage
of plasmapheresis for the treatment of
PANDAS:
“On November 25, 2004, Julia exhibited
an acute onset of severe obsessive and
compulsive symptoms which included the
following: circular pacing, compulsively
repeating 3-4 actions such as knocking
hard on tables, washing hands, turning
the light switch on and off, dragging her
foot, touching walls or other surfaces,
etc. She would knock her knuckles so
hard it caused bleeding. In addition,
she complained of headaches and joint
pain and she cried continuously. Her
heart rate increased to 170 BPM, and
she had a rapid, hyperventilating type of
breathing, which resulted in dry, cracked
model and treated accordingly. For
example, a child’s (or adult’s) inability to
speak is framed as a symptom of a severe
problem affecting the brain. The medical
model allows treatment and does not
categorically stigmatize the individual.
and bleeding lips. During these episodes,
Julia did not eat, drink, and slept less than
two hours a night. She could not relax her
muscles enough to urinate and suffered
with constipation because nothing in her
GI tract was moving.”
I went on to describe how the shot of
Rocephin™ (antibiotic) she received in
the pediatrician’s office took away her
“psychiatric” symptoms for a period of
10 days. We started our journey to help
our child at our local, renowned hospital
(medical) for children. They would not
treat her and referred me to a psychiatrist
who wanted me to admit Julia to an
inpatient psychiatric center. I told him
about the antibiotic helping her symptoms
and suggested a workup for PANDAS. He
had heard of this disorder but completely
dismissed it because she had autism, and
he said this was typical behavior that he
saw all the time. I asked when I would get
my sweet autistic girl back, and he said
probably never. He refused to refer her
to be worked up medically or to consider
any other possibilities, even though he
did not know her before this episode. It
was as if he didn’t believe me about the
abrupt change in her behavior. I was not
comfortable with inpatient psychiatric
hospitalization, but I was so tired, and the
stress on my husband and two sons was
enormous. Seeing what this was doing to
my other children forced me to consider
this hospitalization. So, I asked what they
would do to treat her in the hospital. I
was told she would have group therapy,
art therapy and, of course, medications
9
 BIOMEDICAL
to help with her symptoms. I said, “Group
therapy for a nonverbal child, how
ridiculous.” At that point, she was not
communicating on the letterboard and
would answer questions if she was given
written choices, but the staff was not
trained in her communication method.
Upon questioning the intake nurse, it
was clear she had no idea about severe
autism. In addition, they would not let
me stay with her even though they could
not communicate with her and admitted
that the staff had limited experience
with autism. After further investigation,
I learned that if I didn’t agree with
the medication management or other
therapeutic measures, they could refuse
to discharge her. The hospital could
keep her as an inpatient and override
my parental wishes if, in their opinion,
she was a danger to herself or others.
If I accepted their help (and I was sooo
tired; I sooo wanted help) I would, in
effect, waive my parental rights. They
could medicate her, zone her out, and I
would have nothing to say about it. (If
she were in a non-psychiatric hospital, I
would be able to stay with my little girl
and monitor the treatment.) Unwilling to
take that risk, my husband and I chose
not to hospitalize her. We kept Julia at
home, and we took turns keeping her
from hurting herself, making her drink
10 THE AUTISM FILE | www.autismfile.com | info@autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE
sips of fluid, take bites of food, and so
on. The daily vigil of witnessing my child’s
pain and being helpless to stop it was
the most excruciating experience of my
life. This was far worse than the autism
diagnosis and her lack of developmental
progress. We had no choice but to give
her the 1:1 care that she needed 24/7 as
we continued to search for help.
I made the rounds in that same local,
specialty hospital for children: neurology,
immunology, and rheumatology – all
to no avail. I finally went to an out-of-
state doctor trained in the Defeat Autism
Now! approach for an intravenous
immunoglobulin (IVIG) treatment, and
it worked. Julia completely returned
to her normal self, but, unfortunately,
most of the effects wore off in a month.
Her case was severe, and she needed
more aggressive treatment. It was very
expensive and not covered by insurance.
How could I fly out of state and pay for
this treatment every month? Our family
went through a severe crisis that year
with these episodes coming and going
over a period of nine months. I finally
found a physician at another local medical
hospital who was not prejudiced about
autism and the behaviors associated
with it. He saw my child as any other
child in need of help for an autoimmune
condition. I won my insurance appeal
and my child received the appropriate
medical care she so desperately needed,
and through a series of plasmapheresis
and IVIG treatments she returned to her
sweet self (no thanks to our local big
medical center specializing in “excellent”
care for children).
Even though the cause of this
disorder is said to be unknown, there is
no excuse to ignore the medical needs
of children because, somehow, these
behaviors are viewed as “normal” for
people affected by autism. A sudden
change in behavior can indicate an
infection or other environmental insult.
In the medical model of disease, there
are variations in how a disease affects
a given population. For example, in
diabetes there are “brittle” diabetics, and
in epilepsy at least 20 percent of people
are considered “intractable” (don’t
respond well to medications). These
variations drive research and a more
aggressive treatment approach. Like the
above diseases, autism is a multifactorial
problem that affects some worse than
others. Many people regard autism
as a spectrum of disorders, and many
experts feel that there are a variety of
phenotypes, with genetic predispositions
and environmental factors converging
to affect different children in different
ways.
ISSUE 33 2009
 Autism is clearly a spectrum disorder.
A diagnosis of Pervasive Developmental
Disorder-Not Otherwise Specified versus
Autistic Disorder implies very different
levels of abilities. Many children diagnosed
with Autistic Disorder who have received
behavioral treatment for their condition
have had documented improvements in level
of functioning. However, biology impacts
psychology. To not treat the comorbid
medical conditions of this disorder is neglect.
Therefore, in supporting the disease model,
proper medical care must be received by
those who need and deserve it. Autism
spectrum disorders present with many
behaviors. Self-injurious behavior (SIB) is
looked at in the mental health model as a
behavior that needs to be extinguished. As
medical clinicians, we see this behavior as
a medical symptom, a self-expression of
pain experienced by our patient. Common
medical practice looks carefully at signs and
symptoms the patient is experiencing. This
leads to a “rule out” of underlying medical
problems in order to diagnose and treat
that medical condition. In mental health
disorders, which currently include autism,
the focus is on the behavior only. That is
akin to treating the depression and anxiety
that accompanies a diagnosis of multiple
sclerosis and not treating the demyelination
of neurons in this progressive disease.
In autism, medical conditions often
manifest as behavior. Many parents we talk
to in our practices believe underlying medical
conditions negatively – and profoundly –
impact their children’s quality of life. These
underlying issues can hinder educational
and other vital brain retraining programs the
child is involved in. Educational therapies
accompanied with biomedical interventions
allow for a better prognosis than a single
strategy can provide. Improved quality of
life and health are the goals. If we change
our paradigm, we can alter our treatment
and dramatically improve outcomes for
individuals and families affected by autism.
To not treat the comorbid medical
conditions of this disorder is
neglect. Therefore, in supporting
the disease model, proper
medical care must be received by
those who need and deserve it.
ISSUE 33 2009 REPRINTED WITH PERMISSION © THE AUTISM FILE info@autismfile.com | www.autismfile.com | THE AUTISM FILE
Sonja’s Story
Our experience is somewhat different
from Vicki’s and Julia’s. When Alexander
was two and a half years old, I was told
by leading experts that my son would not
improve and that I needed to prepare for
his future institutionalization and accept
him as he was - autistic. I felt in
my heart that he was medically
ill. He lost weight, his
muscles were wasting, and
he lost speech. I would find
him spending time lining up
toys and spinning objects
instead of playing with
them. As a mom first and a
nurse second, I didn’t see his
behaviors as needing shaping or
therapy; rather, I believed they were
his inner expression of biology gone
awry. When he had his first endoscopy
and colonoscopy, he was found to have
eosinophilic esophagitis, pancreatic
insufficiency, and lymphoid hyperplasia.
Further testing revealed a carnitine
deficiency, increased oxidative stress
around the mitochondria as evidenced
After many years of biomedical treatment, I am proud to say my
son is no longer on the spectrum. Had I not seen him as sick, I
would not have looked for medical interventions that brought him
back to health.
As nurses, we believe that many autistic
behaviors are self-protective and/or are
reactions to the biological processes that
are occurring within the individual and
that these behaviors develop because
the person with autism is attempting to
solve an underlying medical problem.
For example, posturing (bending over
chairs, excessive squatting, pushing on
the stomach, etc.) prior to and/or during
the process of having a bowel movement
is a reaction to constipation or pain due
to evacuation (pooping). Encopresis
is defined in the DSM-IV-TR as an
elimination disorder that involves having
bowel movements in inappropriate places
(e.g., clothing, floor, etc.) that occurs in
individuals who are four years of age or
older and “is not due exclusively to the
physiological effects of a substance (e.g.,
by a muscle biopsy, and mildly abnormal
EEG changes. I then was advised to
place a G-tube in Alexander so that he
would receive “proper” nutrition. God
had another plan for me. I had been to
many appointments where I had glanced
at an article written by Karen
Seroussi regarding the gluten-
free/casein-free diet and
the positive influence this
had on her son. At first, I,
being of “sound medical
mind,” could not believe in
such information. However,
nothing else was working, so
I thought, “Things cannot be
worse than they are now, what
do I have to lose?” After many years
of biomedical treatment, I am proud to
say my son is no longer on the spectrum.
Had I not seen him as sick, I would not
have looked for medical interventions
that brought him back to health.
Currently Alexander is 12 years old and
is even able to share what he remembers
about being autistic.
laxatives) or to a general medical condition
except through a mechanism involving
constipation.” However, the behaviors
associated with encopresis (e.g., digging
in the anus and fecal smearing) can be the
result of the discomfort associated with
liquid stool passing around a fecal mass
located in the large intestine. Even though
it is accepted by the medical community
that constipation is associated with this
behavior, constipation is often interpreted
as a psychological – not medical –
condition. As explained above, these
problematic behaviors often originate
as the result of a medical condition. The
child attempts to solve the problem of
constipation or impaction through rectal
digging to remove hard stool or perhaps
scratch the itch associated with a yeast
infection. These behaviors are then
11
 BIOMEDICAL
It is medical neglect, however, if a child is not referred for an
evaluation of possible causes of behaviors that could have
their origins in medical problems such as gastrointestinal issues,
infections, underlying seizures, etc.
reinforced because, in the child’s eyes, the
behavior brought a relief of symptoms. As
a result, the behavior persists even when
the original problem is resolved. When this
maladaptive behavior occurs, therapists
attempt to extinguish the behaviors using
behavioral modification strategies.
It is medical neglect, however, if a
child is not referred for an evaluation of
possible causes of behaviors that could
have their origins in medical problems
such as gastrointestinal issues, infections,
underlying seizures, etc. As nurses caring
for these children, often with minimal
support from traditional medical centers,
we see the pain and hardships families
face trying to navigate medical treatment
for their children. We see the comorbid
medical problems not as a coincidence, but
as part of this disease model called autism.
Granted, medical assessment of these
children is difficult due to communication
problems, altered sensory processing
systems, muted cues, and social
interaction impairments. With proper
training and experience, however, it
is possible to gather a great deal of
information about the internal issues
facing the child. Additionally, laboratory
and other testing must be approached
differently and “less is not more” in this
regard. For example, a gastrointestinal
specialist may take a “wait and see”
approach with a child who communicates
normally and hesitate to do invasive
testing with a set of symptoms including
intermittent abdominal pain and diarrhea.
On the other hand, a child with severe
autism deserves an aggressive evaluation
of possible underlying medical problems
because of their inability to communicate.
High pain tolerance often accompanies
an autism spectrum diagnosis and can
mask inflammation and other problems.
It is vital that we redefine the current code 299.00, Autistic Disorder,
and break the bias of autism as an untreatable condition.
12 THE AUTISM FILE | www.autismfile.com | info@autismfile.com REPRINTED WITH PERMISSION © THE AUTISM FILE
A full medical evaluation is not possible
using the ICD9 autism code of 299.00 due
to this being a psychiatric diagnosis code.
This psychiatric diagnosis, for the most
part, precludes medical testing – often not
even an EEG. There is published research1
that 60 percent of children with autism
who have no evidence of clinical seizures
have abnormal EEGs and may benefit from
anti-seizure medication. However, a child
cannot be referred for an EEG and receive
insurance reimbursement under the autism
diagnosis code of 299.00. Furthermore,
as an ICD9 code, 299.00 is a red flag; if
paperwork is submitted with 299.00 as a
primary diagnosis, then the claim will be
denied due to the fact that it is considered
an untreatable condition.
Headaches would be covered, but how
do we know the child has headaches
if they cannot communicate? If head
banging could be seen as a symptom of
pain, then the test would be justifiable;
however, in the mental health model, it
is not connected with pain or looked at
in that way. Excessive self-stimulatory
behavior could be a response to pain as
can be pacing, anxiety, and other so-called
“mental disorders.”
So, on the basis of “the code,”
practitioners will not give children with
autism a thorough diagnostic workup
and insurance companies will not cover
important medical tests.
As nurses in the field of biomedical
intervention, day after day we witness the
pain and often progressive nature of this
disease. We did not develop our skills in
school or at the hospital; instead, we had
our own affected children who required
our help. We as parents and nurses were
forced to look at the current medical
system. What smacked us in the face
when our children were diagnosed was the
utter realization that there was no medical
treatment for autism. We were living in the
midst of the “best medical hospitals,” yet
the diagnosis of autism created a chasm,
separating our children from available
medical care. The experts said our children
didn’t need medical care. As a result, there
was little help for their distress, pain,
allergies, eczema, diarrhea, constipation,
inability to sleep, disabling headaches,
and seemingly irrational behaviors. Why?
The current mental health model does
not treat underlying medical conditions.
Remember autism is currently coded as a
“mental health disorder.”
Due to the lack of a more appropriate
classification and coding, for the
mainstream medical practitioner there
is no concern about medical negligence
and no reason to treat an “untreatable”
condition such as autism. The comorbid
medical conditions of autism have not
been clearly defined by medical standards
of practice. In cancer, a disease that has
no known discrete cause, treatment is still
offered. If you ask any parent about their
autistic child’s health, they will recite a
list of conditions. Autism currently affects
vast numbers of children, and we need
to start treating the comorbid medical
conditions – not solely with psychotropic
medications (which do not address the
comorbid conditions and often have their
own adverse effects) but with appropriate
medical treatment targeted to that
individual’s problems.
It is vital that we redefine the current
code 299.00, Autistic Disorder, and break
the bias of autism as an untreatable
condition.
References
1
Chez MG, Chang M, Kresne V,
Coughlan C, Kominsky M, Schwartz A.
2006. Frequency of epileptiform EEG
abnormalities in a sequential screening
of autistic patients with no known
clinical epilepsy from 1996 to 2005.
Epilepsy Behav 8(1):267-271.
ISSUE 33 2009