I do not remember studying much about Autism in medical school, other than hearing the term and that it is a rare disorder of the childhood. Our first child was diagnosed with Autism. I could tell she was “different” even when she was a few weeks old but did not know what it was, until the professionals diagnosed her when she turned 3. This was in the early 90s, when it was still a rare diagnosis. Not many pediatricians were familiar with the problem. There was not much available as treatment. Applied Behavior Analysis (ABA) was just beginning to take root as the mainstay of treatment. Fast forward 20 years, things have not changed much but Autism Spectrum Disorder (ASD), as it is now called, has become more prevalent.
Here is how the US Preventive Services Task Force (USPSTF) recently described ASD:
“Autism spectrum disorder is a disorder of brain development in children. It affects a child’s behavior and his or her ability to interact with others. Children with ASD have trouble communicating with and relating to others and may have different interests than children without ASD. Some signs and symptoms of ASD include avoiding eye contact, not playing with other children, repetitive behaviors, language difficulties, and showing an intense focus on certain objects while having no interest in other things. Autism spectrum disorder can range from mild to severe. Symptoms of ASD are usually first seen in the second year of life but can start earlier or later.”
There is no clear and predictable cause for ASD, nor a marker or lab test to diagnose it. There are no definitive treatments available; most treatments show limited success. There is no known cure for ASD, nor are there medications specifically targeted towards its symptoms. These individuals are expected to have a normal lifespan. Although the literature and professional societies describe it as a disease of the childhood, children with ASD do grow up to become adults with ASD! Suddenly the problem becomes much bigger, as these adults with ASD have to now live, work and thrive as individuals in the society. It takes a huge toll on the parents. It can be physically, emotionally, socially and financially burdensome for the family of these individuals. Our society is not prepared to be able to take care of their lifelong needs.
Clinically, ASD is a complex condition. The range of symptoms spans social, emotional, physical and functional realms. And each individual may present with different symptoms and pose a unique clinical challenge. Over the last 15 to 20 years the prevalence of ASD has been increasing. Centers for Disease Control estimates that 1 in 68 children born in the United States has ASD. There have been many reasons cited for this increase, but none of them holds up to rigorous scientific scrutiny. Although diagnosing children early may have benefits, the USPSTF did not find enough evidence to recommend universal screening. It has left it to the discretion of the parents and the professionals dealing with the child. Although over diagnosis has been raised as an issue, CDC found that 18% of the children with ASD symptoms were undiagnosed.
The ASD definitions for the purposes of services in California vary widely. All persons diagnosed with ASD are not eligible for Special Education services. Out of these, only some qualify for services under Department of Developmental Services’ definition. In the meantime, the school districts and regional centers have been swamped with rising numbers and the need to provide services. Their resources are not growing with the expected increase in the numbers of their service population.
These rising numbers can challenge our society at many levels. As medical professionals, we have a large role to play, especially in the research arena. A lot of work needs to be done, to take on the biggest challenge of our generation.