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When Definitions Change: Autism and the DSM-5

Autism does not look the same from one person[[wysiwyg_imageupload:181:]]
to the next. 

It is unique in each diagnosis, showcasing different challenges and attributes for all. Along the autism spectrum, people share a wide range of developmental and social abilities, which poses challenges when defining and diagnosing autism. This past week, the U.S. Centers for Disease Control and Prevention published new findings that report a staggering one in every 68 children has autism spectrum disorder (ASD). The community understandably has concerns about the updated statistics. However, the inconsistencies with diagnosing – and misdiagnosing – autism led to the American Psychiatric Association fifth edition update of the Diagnostic and Statistical Manual of Mental Disorders, (DSM-5) in 2013.

What’s new in the DSM?

While “autism” has become a familiar household word it is as widely misunderstood. Research and ongoing psychiatric practices inform ASD definitions and symptoms, including how “autism” is or isn’t used.

According to Autism Speaks, the new DSM-5 criteria can be summarized as follows:

People with ASD must show characteristics within two domains: 

  1. Persistent deficits in social communication and social interaction, such as social-emotional reciprocity (e.g., empathy), nonverbal communication, and deficits in developing, maintaining and understanding relationships
  2. At least two types of restricted and repetitive patterns of behavior, including stereotyped or repetitive motor movements (e.g., hand flapping), insistence on sameness or inflexible adherence to routines, highly restricted, fixated interests or hyper reactivity to sensory input (e.g., touch, light, sound) or unusual interest in sensory aspects of the environment.

There are mixed opinions regarding whether these new criteria are expected to decrease diagnoses rates. The DSM-5 also impacts what people can be diagnosed with, and removes Asperger’s syndrome from formal diagnostic terminology. These more specified guidelines matter because it increases the likelihood of diagnostic and treatment consistency across the United States by removing the ambiguity of previous sub-diagnoses.

Autism in communications

Autism is a regular media topic with conversations trending about the cause, diagnosis, and treatment methodology. While these topics can bring legitimate and needed attention to the autism conversation, some stir controversy and detract from the care for those learning to adjust to and manage their loved one’s or own autism diagnosis.

Communicating about a topic like autism brings additional areas of consideration. Grouping autism in with other conditions like diseases is a slippery slope. This approach caused conflict for Seattle Children’s Hospital (SCH) in 2013, when it ran a brand campaign highlighting the goal of “wiping out cancer, diabetes, and autism.” Although SCH had good intentions of making ASD research and treatment a focal point of its overarching brand campaign, the community response revealed possible communication missteps worth evaluating:

  1. Publishing a campaign not properly vetted by the appropriate experts or advocates
  2. Having an incomplete understanding of referenced content

In this case, these missteps resulted in perceived insensitivity or naiveté by grouping autism (a developmental disorder) with diabetes and cancer (diseases that can cause death). SCH followed best crisis communication practices by removing the campaign and apologizing to the autism community for the “hurt and anger these ads caused.”

As a communications professional, it is important to keep in mind not only the social and public news surrounding a sensitive healthcare topic but also the potentially changing definitions and standards of care for that disease or disorder. Working with clients on healthcare topics that are prone to change and often in the media spotlight requires a detailed and regular pulse on media as well as an in-depth understanding of the clinical landscape.

April is Autism Awareness Month! To learn more, visit Autism Speaks.