Then and Now: A Look at Autism Over the Last 20 Years

Over the last 20 years SARRC has effectively advanced the understanding and treatment of autism. But what exactly did the autism landscape look like in 1997? We asked members of our research team to explain.

Thanks to a supportive community, over the last 20 years SARRC has been able to advance the understanding and treatment of autism. But what exactly did the autism landscape look like in 1997? We asked members of SARRC’s research team to explained. Here’s a glimpse of how far we’ve come.

What is the prevalence of autism among children in the United States?

In 1997, autism was on the rise and so were people’s concerns, yet there were no dedicated efforts to monitor prevalence rates. Rough estimates suggested that 1 in 2,500 children were likely to be diagnosed with autism. In the year 2000, the Centers for Disease Control and Prevention (CDC) began carefully tracking prevalence rates through the Autism and Developmental Disabilities Monitoring Network. Today, the CDC reports that one 1 in 68 children has been identified with autism spectrum disorder (ASD).

What is the average age children are receiving an autism diagnosis?

The estimated average age of diagnosis in the U.S. was 4 years, 4 months in 1997. While parental concerns were noted in earlier development, it was more common for children to be identified and diagnosed upon reaching school age. Currently, the CDC states the average age of diagnosis in the U.S. is 3 years, 10 months. However, research has shown that a reliable diagnosis of autism can be made as early as 2 years old.

What are the expected outcomes for adults with autism?

When SARRC was founded in 1997, very little was known about outcomes for adults with autism; the prevalence of autism was continually increasing, but long-term expectations were unclear. While many large care facilities closed in the 1980s, it was not uncommon for institutionalization to be suggested as part of the care of people with autism. Children who were diagnosed in 1997 are young adults now, and places like SARRC are working to build and shape inclusive employment and educational opportunities.  According to a 2015 National Autism Indicators Report, only 32 percent of adults with autism had a job for pay outside of the home within the first two years after leaving high school.

How have diagnostic criteria changed in the past 20 years?

Autistic disorder, Asperger’s disorder and pervasive developmental disorder (PDD) were three distinct developmental disorders with different diagnostic criteria, namely a lack of significant language delay in individuals with Asperger’s and an atypical onset or atypical presentation of autism associated with PDD. The division between these three developmental disorders often caused issues related to access to services as well as general care.

In 2013, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) newly identified autism as autism spectrum disorder (ASD) folding all subcategories of the condition into one umbrella diagnosis, where autistic disorder, Asperger’s disorder and PDD are no longer considered separate conditions.

Since our founding, SARRC has remained dedicated to conducting innovative research, provide evidence-based practices, disseminate effective training and build inclusive communities for individuals with autism and their families. For more information about resources, research and programs offered by SARRC, visit autismcenter.org.