A Worldwide Medical Crisis
Autism was once so rare that it did not have a name. The renowned American psychiatrist Dr. Leo Kanner described autism in a 1943 paper based on observations of 11 children. For several decades afterwards, autism was thought to afflict 4 or 5 out of every 10,000 children. Over the past two decades, this population has exploded. In March of 2013, the Centers for Disease Control (CDC) announced that parent-reported autism spectrum disorders (ASD) now affect 1 in 50 children aged 6-17.
Autism isn't the only growing problem. The National Survey of Children's Health (NSCH) shows a 21.8% increase in Attention Deficit Hyperactivity Disorder (ADHD) from 2003 to 2007. Obsessive Compulsive Disorder (OCD), Chronic Fatigue Syndrome (CFS), Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS), Pervasive Developmental Disorder (PDD), Tourette syndrome, and other neuroimmune disorders are also on the rise.
A diagnosis of autism or a similar condition can devastate families, emotionally and financially. In 2006, Michael Ganz of the Harvard School of Public Health published research that estimated a cost of $3.2 million for lifetime care for a single autistic person. The CDC's report Mental Health Surveillance Among Children — United States, 2005–2011 estimates a total annual cost of $247 billion.
In light of this crisis, how is the system responding now? Educators and psychologists use the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to determine a diagnosis. The criteria are based on observations of the patient's behavior, not medical tests. Typical interventions include behavioral modification, speech, and occupational therapy. With heroic efforts from parents and therapists, these treatments can help some, but few of these children will have a normal, productive life until we realize that we have misunderstood what is happening. We are teaching chronically sick kids coping skills instead of trying to cure their illness.
The world must recognize that these children are ill. Genetic predispositions play a role, but genetics can't cause an epidemic. Are these mental disorders? Researchers have known for decades that most of these children also have physical symptoms, including allergies, gastrointestinal problems, seizures, chronic illnesses, motor issues (clumsiness), and fatigue. A growing number of researchers are finding that these conditions may be related to inflammation and immune system dysregulation. There may be multiple contributing factors, such as environmental stresses or viruses. It is no wonder that these children have trouble thinking, communicating, and relating when they are chronically ill. Many of these children developed normally until they regressed after becoming sick. They were not born with this disease; they acquired it. And some are recovering. Too few. It is time for world governments and medical systems to make curing these diseases a priority!
Although these conditions are not completely understood, research has shown that these people are in a complex neuroimmune disease state. Correct medical evaluation, diagnosis and treatment will lead to better outcomes. Existing medications are already being used successfully for some of these patients.
Our children must be medically recognized and treated for their complicated diseases, just as our medical and pharmaceutical systems have done in the past for childhood epidemics like polio, measles, whooping cough, scarlet fever, and many more.
To encourage this shift in thinking, these children and adults should be reclassified under a medical condition such as encephalitis or encephalopathy. The ICD-9, which is used in medical coding for insurance claims, currently places Autistic disorder (299.0) and related conditions in the Mental Disorders category (290-319). This classification discourages medical treatment and limits expectations for these children.
The governments of the world must recognize the true nature of this disease and invest the resources needed to end it. We are asking that they:
• Recognize that these children and adults are suffering from physical diseases that dull their cognitive abilities, not mental disorders with physical symptoms.
• Reclassify these individuals under a physical, medical ICD diagnosis code to encourage more appropriate care.
• Significantly increase funding for medical research and treatment to rescue millions of desperate people.