Autism 299.00 BREAKING THE CODE: Paradigm Shift: Mental or Medical by Vicki Martin, RN, and Sonja Hintz, RN

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 8

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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 [email protected]. REPRINTED WITH PERMISSION © THE AUTISM FILE

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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 (DSMIV-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 multisystem 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

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

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.

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

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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 [email protected] | www.autismfile.com | THE AUTISM FILE

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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

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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-ofstate 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.

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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

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

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 glutenfree/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.

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.,

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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 [email protected] | www.autismfile.com | THE AUTISM FILE

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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.

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

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.

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It is vital that we redefine the current code 299.00, Autistic Disorder, and break the bias of autism as an untreatable condition. 12

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