By Dr. Gary Deel, Ph.D., JD
Faculty Director, School of Business, American Public University
This is the second of a three-part series on coping with autism.
In the first part of this article series, I told the story of my autistic son Carl and how I came to be involved in autism research. In this installment, I will review what autism is and how it affects the population of the United States today.
Autism is a psychological and behavioral impairment that appears to be affecting children worldwide at an increasing rate. Yet the causes and effects of this condition are still not well understood. Autism encompasses a range of mental conditions that primarily hinder a person’s ability to communicate and navigate social interactions and relationships.
Autism symptoms tend to appear between two and three years of age, although some cases it can be properly diagnosed as early as 18 months, just as my son Carl was. Symptoms can include intellectual impairments, language challenges, problems with new environments or routines, gastrointestinal issues, and, in more severe cases, motor function problems, violent physical tantrums, self-injury, and even seizures.
Psychiatrist Eugen Bleuler Coined the Term Autism to Describe a Schizophrenic Patient
The word “autism” was first coined in 1908 by psychiatrist Eugen Bleuler to describe a schizophrenic patient whom Bleuler described as having withdrawn into his own world. Since then, a hundred years of research has cultivated a wide array of data on autism, as well as perspectives through which to look at such data.
For example, two of the earliest autism researchers following Bleuler were psychiatrists Hans Asperger in Europe and Leo Kanner in the United States. Each worked with patients who displayed different symptoms of autism and at different levels of severity. As such, the two psychiatrists had starkly different views on the condition. Asperger viewed his patients as mostly able-bodied and able-minded, save for some minor abnormalities; Kanner described his patients as severely debilitated and/or disabled.
Up through the 1970s, many parents and even general practitioners still confused autism with mental retardation and/or psychosis. It wasn’t until the 1980s and 1990s, after Asperger’s research was translated into English and published in the United States, that autism began to be recognized as a major U.S. health concern.
Additionally, doctors in the United States had assigned different names to autism spectrum conditions, including childhood disintegrative disorder, pervasive developmental disorder and Asperger’s Syndrome. However, in 2013, the American Psychiatric Association voted to include these previously distinct conditions under the broader category of autism spectrum disorder (ASD).
In 2018, the Center for Disease Control and Prevention (CDC) estimated that about one percent of the world’s population was autistic. ASD affects approximately one in every 59 children born in the United States. The condition is approximately four to five times more prevalent in boys than in girls, with one in every 37 boys but only one in every 151 girls being diagnosed. But the reason for this disparity is unknown.
Autism Is a Condition that Is Believed to Be Present at Birth
Autism is a condition that is believed to be present at birth. Although treatment in the form of behavioral and other therapies has shown that some individuals have some success, symptoms in many others will persist into adulthood. About 3.5 million Americans live with autism, and each year approximately 50,000 autistic teenagers enter into adulthood, the CDC says. Around a third of all autistic people will remain non-verbal throughout their lives, and another third will be classified as intellectually disabled.
Therapy is the most common treatment for autism, including behavioral, language and occupational (motor function) if necessary.
Early intervention is thought to be the most effective treatment for improving autism symptoms in young children. Developmental specialists commonly recommend 30+ hours of therapy per week.
In addition to therapy, people with autism might also have other healthcare needs including doctors visits and evaluations, prescription medications, and special diets to accommodate digestive issues or allergies.
In the Most Severe Cases, Costs Can Be Crippling for the Patients and Their Families
The financial costs of treatment for autism are significant. In the most severe circumstances the costs can be crippling for the patients and their families. Although many insurance plans provide some coverage for these therapies, the amounts, types and policy limits vary widely from plan to plan.
Additionally, educating autistic children is estimated to be about 70% more expensive than educating developmentally normal children. If an autistic person’s family has to pay out of pocket for these special resources, they could be looking at tens or even hundreds of thousands of dollars per year. It has been estimated that on average autism care will cost affected families between $1 million and $3 million over the lifetime of the autistic person, depending on the nature and severity of the person’s impairments.
Moreover, the costs of autism on society are enormous. A 2012 study estimated that government-subsidized healthcare services for autistic persons cost American taxpayers approximately $126 billion per year. In terms of lost productivity, the U.S. Bureau of Labor Statistics estimated in 2018 that less than 20% of disabled persons were employed. This puts a tremendous strain on our resources and economy — all the more reason that research for a cure or prevention should be of the highest priority.
The CDC also estimates that autism incidences in the United States have increased by about 120% between 2000 and 2010, making it the fastest growing developmental disability for Americans.
Experts disagree about the cause of this spike. Some think that incidents of autism are on the rise; others believe the rate of autism has not changed, and the increase in reported cases is attributable to the fact that more children are being diagnosed as autistic than ever before. Proponents of the latter position suggest that this is the result of new testing methods and better access to pediatric developmental psychiatrists.
But what causes autism? How can we treat it today? And how might we cure it or prevent it tomorrow? We still do not have all the answers. In subsequent parts of this article series, I will address these questions and more.
About the Author
Dr. Gary Deel is a Faculty Director with the School of Business at American Public University. He holds a JD in Law and a Ph.D. in Hospitality/Business Management. He teaches human resources and employment law classes for American Public University, the University of Central Florida, Colorado State University and others.