Autism Awareness Month: The Long-Term Impact of 1 In 50

The Long-Term Impact of 1 in 50

A startling piece of data has marked the arrival of April as Autism Awareness Month and it should serve as the centerpiece discussion about what can only be described as an epidemic, and what we are collectively doing to confront it.

1 in 50 school-age children in the U.S. are now viewed as having an autism spectrum disorder (ASD) according to a report released in late March by the Centers for Disease Control (CDC) and Health Resources and Services Administration (HRSA). This sobering statistic, which represents a significant increase from recent years which had pegged the prevalence of ASD children at 1 in 88, is partly attributed to better parental awareness of the characteristics of spectrum disorders that may exist in their children, which in turn has produced better parental reporting.

This month is also coinciding with a long-overdue national conversation about mental health issues overall. That dialogue is accompanying current debates about stricter gun control laws being heard from Washington to individual statehouses across the country in the wake of numerous mass shootings, and the Newtown massacre in particular, and the revelation that the 20-year-old shooter Adam Lanza, had Asperger’s syndrome. The portrait drawn of the Lanza family by innumerable news accounts and a Hartford Courant-PBS “Frontline” series of reports in particular, revealed a profound lack of understanding of his spectrum disorder, and an inability to properly manage his difficulties with divorced parents; challenges at school; struggles with social relationships; and importantly, fixation oriented interests.

News reports have also indicated his challenges were left largely unattended once the routine and structure of the high school years ended. However, a lot of the reporting and debates around this tragedy are producing grossly misinformed conclusions which advocates worry are resulting in a stigma being attached to those needing and seeking mental health services and support. What must occur is a better informed national dialogue and a commitment to funding comprehensive programs aimed at improved awareness and understanding of spectrum issues for the rapidly growing numbers of individual families who will need it.

Supporting efforts, programs, and agencies equipped to do that is vital, as the long term impact and cost factor alone tied to 1 in 50 presents a daunting challenge. A Harvard study estimated that through the combined costs of therapies, public education, community programs, in-home assistance, adulthood supports, and beyond, it requires roughly $3.2 million to support an individual with autism through their lifetime.

Yet adequate financing is currently diminishing, not increasing despite the rising numbers according to a leading advocate for the ASD community in our own state. “This is a national crisis with an economic and social impact unlike anything we’ve experienced,” says Joanne Quinn, Executive Director of the Autism Project of RI.

Despite the escalation of ASD occurring in children, Quinn points out that services are being cut in school systems and consequently students with ASD are not getting the supports they need, even if they are written into an IEP (Individual Educational Plan). She also cites the lack of full understanding for appropriate supports within the current debate over the use of the NECAP test as a graduation requirement.

“The requirement is particularly concerning to students with autism and their unique learning and testing/assessing style is not being taken into consideration as leaders move forward with education reform,” she says.

School staffs continue to require improvements in training to support students with ASD, she says, and Asperger’s, in particular, is often not well understood. Quinn says it’s very concerning that a true sense of urgency by elected leaders over the rapidly increasing numbers is just not being seen.

“It’s only going to get worse as 1:50 students with impaired social, emotional and cognitive abilities graduate to the adult world,” she states. “How are we going to take care of them? How will they be equipped for jobs? Where are they going to live?” are among the critical questions she raises. But it should be noted that progress and achievements for ASD children and young adults can and are occurring when the proper supports and programs are in place. The work done and successes shown by the Autism Project’s comprehensive program of social skills enhancement classes, sports, arts, and community activities, and a widely recognized summer camp program, have validated that.

In public school special ed programs, improvements in inclusion classroom settings and more innovative approaches to core subject lesson plans are proving that ASD children can be successful in K-12 education. Beyond K-12, there is a growing recognition that certain ASD students can tackle college level work within the appropriate settings, and at a select number of universities throughout the region and around the country, ASD young people are having success at post-secondary ed programs when properly designed programs, appropriate supports, and greater curriculum options are offered.

ASD children, teens and young adults are capable and deserving of successful outcomes, but it will take a better informed national discussion and a substantial commitment to bring that about. The rising numbers demand that we not lose sight of that challenge this April, and in the days to come.