Understanding Autism Spectrum Disorders: The Key to Ethical and Effective Supports
The number of children diagnosed with Autism Spectrum Disorders (ASD) has grown exponentially within the past two decades. Acknowledging that accurate numbers are difficult to measure for a disability defined by characteristics, the Centers for Disease Control Autism and Developmental Disabilities Monitoring Network reports that currently approximately one in every eighty-eight children is diagnosed with an Autism Spectrum Disorder.
Information about Autism Can Be Confusing
As a result of this reported prevalence, many sources have reported on the subject, including professional journals, the media, and personal accounts. With so much information, it is difficult to know what is to be trusted. The professional bias is to lean toward the scientific information found in peer-reviewed journals. However, it is important to recognize that there is bias in every source of information.
Research, and sources of research funding, are also questionable. In a summit of experts held at Harvard University by the Autism Self-Advocacy Network (ASAN) in December 2011, the ethical and moral issues regarding research agendas and funding sources for ASD research was the topic of discussion. A major point made by Ari Ne’eman, president of ASAN, was that the agenda for funding research is not in sync with the mandates of disability policy (Autism is one of the 13 disabilities listed in the Individuals with Disabilities Education Act of 1991), which addresses quality of life issues. The vast majority of funded research is focused on cure and understanding of the etiology of ASD.
Secondly, most educational research is aimed at the early childhood and early elementary aged child. Therefore, there is a bias following this same direction in the professional literature, because what gets funded and demonstrates results is what gets published. For every specific strategy study that demonstrates a result, the question remains: how many studies have been conducted that do not show a measurable effect? It seems only logical that journals would be interested in publishing articles that demonstrate an effect so that a conclusion or inference can be made to inform future research.
The media have covered ASD in news specials, on talk shows, and on news shows. Many of the guests on these shows have a personal experience and/or agenda that they want to share. For instance, celebrity Jenny McCarthy has gone on shows to share her views and concerns on the effects of vaccinations and the rise in the number of children who present with an ASD. Movies, and television shows from Law and Order to Parenthood, have been made both about and including characters with the ASD label, and show them from various points of view. Again, this can present a confusing and sometimes contradictory view of autism spectrum disorders.
No One Strategy Will Be Universally Effective
Add to the mix that it is referred to as a “spectrum disorder.” By definition, it is a bio-neurologically based developmental disability defined by characteristics in three core areas: communication, social interaction, and behaviors and/or special interests. All have complex overlap and crossover, and each characteristic can vary along a spectrum of severity and/or intensity.
With all the variables and variability associated with ASD, specific strategies of support cannot be considered uniquely or globally effective to students with an ASD. Simply put, there are no “autism only” strategies, nor are there strategies that will work for every student with the diagnosis. What all this means for educators is that a filter is needed to glean relevant information from the many sources of information.