Researchers and Stakeholders Attend Autism Research Conference Amid Fundamental Change in Diagnostic Criteria

By Heather Adams, Fellow, FXB Center for Health and Human Rights

In 2012, 1 in 88 children and 1 in 54 boys in the United States will be diagnosed with autism, a figure that exceeds the number of children who will be diagnosed with AIDS, diabetes, and cancer combined.  Recent research findings estimate the annual cost of autism in the US at $126B. Yet this lifelong disorder attracts less than 5% of the research funding of less common childhood diseases.[1]  Despite this shortfall, researchers and stakeholders (individuals with autism, parents, and caregivers) convened in Toronto for the 2012 International Meeting for Autism Research (IMFAR), an event whose theme, ‘looking ahead to the next decade of autism research,’ seeks to foster a cross-disciplinary collaborative approach to autism research.  The oral and poster presentations reflected this goal, with globally conducted research covering diverse fields including: genetics and genomics, neuropathology, education, employment and community, screening and prevalence, and global knowledge.  Scientific panel discussions ran concurrently, covering topics such as communicating autism science, sleep disturbances, and social perceptions in toddlers with autism spectrum disorders (ASD).  A presentation from members of the Palestine Happy Child Center (PHCC), where partnerships were fostered between local health providers and the Royal College of Pediatrics and Child Health (UK), illustrated the efficacy of a local response to autism in a global context.  The PHCC has developed educational intervention programs reflecting the language and culture of the Palestinian population, along with training programs for pediatricians and nurses to screen young children for autism during immunization visits.

The current review of the diagnostic criteria for ASD has caused concern and criticism. The IMFAR conference provided a timely opportunity for Dr. Susan Swedo, MD, chair of the committee tasked with developing and revising the diagnostic criteria for ASD, to address the critics. Of paramount concern is the prospect that under the new criteria, individuals such as those with Asperger’s Syndrome would fail to meet the new criteria for autism and consequently lose access to a range of health and education services. Dr. Swedo emphasized that the intention of the committee is not to reduce the number of individuals diagnosed with ASD, but to include all individuals who are on the spectrum.  In summary, the proposed changes would merge the current three symptoms of autism into two: deficits in social communication and repetitive behaviors.  In addition, under the proposed new diagnostic criteria (referred to as DSM-5), the diagnosis will specify whether an individual has an intellectual disability or language delay.  The impact of this change on individuals with autism and their families is unclear.  What is clear, however, is the concern voiced by professionals and families that autism is not just a childhood condition; in general, it is a lifetime condition that requires long-term solutions.

As IMFAR enters its second decade and looks ahead to the advancement of autism research, it does so against the backdrop of a sobering reality. Within the United States, the Center for Disease Control (CDC) has described autism as a public health crisis, but it is also a personal crisis, for behind each research project and financial statistic is an individual child, adolescent, or adult with autism – and a family.  A significant minority of the US population is now affected by autism, yet ease of access to health care, education, adult services, and resources remain a considerable challenge.  It is also a global challenge. Initiatives at national and local level which recognize the specific needs of this population are imperative.  Through strengthening and empowering individuals with autism and their families, the autism crisis might not be averted, but it can be managed thus ensuring the wellbeing of so many is protected. The need is great.

[1] Autism Speaks