As recently as 1990, autism was considered a rare and hopeless disorder. The prevalence was thought to be 1 in every 2,500 children; little was known about the efficacy of treatments; and fewer than 25 scientists called themselves autism researchers.
Today in America, autism affects as many as 1 in every 166 children (including all autism disorders, such as Asperger's disorder). On average a family receives the devastating diagnosis of autism every 21 minutes. Once believed to be caused by cold and distant mothers, autism is now among the most common and severe developmental disabilities facing children in the United States. Indeed, autism is a national health crisis that costs the U.S. economy an estimated $90 billion annually and is more prevalent among children than juvenile diabetes, cystic fibrosis, and childhood cancer combined.
Although parents and healthcare professionals have shown that autism is amenable to treatment and more rigorous scientific research is moving forward, the disorder remains a major public health problem with virtually no medically proven treatments, no curative protocols, and no clear scientific understanding of why it is so pervasive and so devastating.
I recently participated in a Brookings Institution roundtable discussion about the history of autism and where we are today. To illustrate the dramatic changes in how society and the medical community have understood and addressed autism, I suggested there have been three distinct ages defining the disorder.
Age of Denial: 1940s-1960s
Autism was first characterized in 1943 by a child psychiatrist at Johns Hopkins University, Leo Kanner, MD. In a landmark paper, Dr. Kanner described 11 children from his practice who presented with limited speech, lack of emotional connection, and an obsessive desire for sameness. For some time, autism was thought to be a form of childhood schizophrenia with no link to biologic factors. This denial lasted well into the 1960s. Tragically, the idea that autism was caused by so-called “refrigerator mothers” who raised their children in a nonstimulating environment was pervasive during this period and produced disastrous misconceptions that still linger today.
Age of Defeat: 1960s-1980s
Once the medical community determined that autism has a biologic origin, the next 30 years were characterized by defeat. Parents were told that nothing could be done to improve the quality of life for their children. Autism was considered a lifelong disorder that couldn't be treated and eventually required some form of institutionalization. Few scientists were involved in autism research, and most of the research was of marginal quality. Families affected by autism had almost no support and little recourse against the disorder.
Age of Hope: 1990s-Present
Beginning in the early 1990s, autism entered the age of hope. The medical community finally began to understand that autism is a complex biologic disorder that could be treated by addressing the distinct challenges associated with it. As autism began to enter our popular culture through the media and entertainment (including movies such as Rain Man), people began to think about autism as a real disorder. The more public and real the disorder became, the more parents began to hope that a cure for autism would come during their children's lifetime. This age represents a revolution in thought and proof that autism may not be a life sentence. Yet we have not begun to reach the age of victory over autism.
A marked increase in autism prevalence was a serious wake- up call to America's public health system in the 1990s. Awareness and hope among parents empowered families to bring their stories to the national arena and use their collective efforts to accelerate scientific research. With the fervent belief that science is the key to finding solutions to the myriad, complex problems of autism, parents engaged the research community, medical practitioners, and the federal government.
In 1995, Cure Autism Now was founded by parents that would leverage hope and determination to recruit researchers and develop the resources necessary to end autism as quickly as possible. We built a vibrant field of autism research based on collaboration and established resources such as the Autism Genetic Resource Exchange (AGRE) and the Internet System for Assessing Autistic Children (ISAAC) to accelerate the scientific assault on autism.
We have made strides, but autism treatment and care remain marginally effective, very expensive, and largely uncovered by insurance. A recent Harvard School of Public Health study by Michael Ganz, PhD, MS, estimates that the direct and indirect costs to care for an individual with autism are as much as $3.2 million over his/her lifetime.
Although scientific research funding has increased roughly tenfold since the 1990s, largely due to the Children's Health Act of 2000, a cure remains elusive. The Combating Autism Act, now before Congress, would roughly double research funding and resources for early detection efforts (sidebar).