Reflecting on Autism Awareness Month: Why Is Awareness Important?

Zenko, Catherine

By: Catherine B. Zenko, MS, CCC-SLP

During the rush of activities on April 2nd for World Autism Awareness Day, a journalism student interviewed me to discuss upcoming events at our center and to learn more about Autism Awareness Month. One of the first questions she asked me was, “Why is awareness so important for autism?” It seems like such a simple question, but when I had to put into words why I do what I do every day to promote awareness, it took me a moment articulate the importance of awareness. My response sounded something like, “Ideally, the more people know and understand what autism spectrum disorder (ASD) is—how individuals think, process, and learn differently—the more understanding they will be when they see a person on the spectrum acting ‘out of the ordinary.’”

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) criteria, autism spectrum disorder consists of deficits in two domains: (1) social communication and (2) restricted, repetitive, and stereotypic interests and activities (APA, 2013). ASD presents in a myriad of ways, thus inspiring the expression, “once you’ve met one person with autism, you’ve met ONE.” Generally speaking, people with ASD have difficulty communicating: some cannot use speech to communicate; some use a combination of speaking, sign language, pictures, or augmentative/alternative communication (AAC); and some speak too much, not understanding the social rules that a conversation involves two people and both people get to talk. Understanding spoken and written language is also difficult and takes more time to process for most people on the spectrum.

The DSM-5 outlines the diagnostic characteristics of the domain of restricted, repetitive patterns of behavior, interests, or activities as the following: repetitive speech, motor movements, or use of objects; inflexible adherence to routines and/or ritualized patterns of verbal/nonverbal behavior; restricted, fixated interests (intense focus); and hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of environment (APA, 2013). All of the diagnostic criteria translate into people who:
• Are literal interpreters of language and concrete thinkers;
• Have difficulty processing all of the sensory information around them and can have both gross- and fine-motor challenges;
• Are visual learners;
• Have a strong sense of logic that is black and white, not much (if any) room for gray;
• Prefer routines and become extremely upset when a routine is disrupted and are sometimes compelled to finish a task they have started, even when the allotted time has expired;
• Have difficulty taking the perspective of others which makes them appear egocentric;
• Are detail-oriented but have trouble seeing the big picture;
• Have difficulty with attention, starting with joint-attention and engagement with others as well as trouble shifting their attention away from their intense interest area (Janzen & Zenko, 2012; Quill, 1997; Rydell, 2012; Zenko & Hite, 2013).

I like to view autism spectrum disorder more like a difference rather than a disability. The term “neurodiversity” is gaining steam lately and illustrates that just because people on the autism spectrum think and learn differently, they are not disabled. One of Temple Grandin’s most famous quotes embodies this idea of “different, not less.” One social media campaign currently trending is #AutismUniquelyYou. This campaign highlights and celebrates each individual with ASD’s unique personality, instead of lamenting it. Another great campaign is #MakeATinyChange that encourages people to make a difference in the lives of individuals with disabilities through any one of 25 small changes.

There have been several stories circulating this month about how a small gesture of openness and understanding can make a huge difference. One that stood out was a story by ABC News about a man who put away his work and played with a little girl with autism sitting next to him on a plane. The man did not understand why “playing Ninja Turtles with the little girl was a big deal,” but to her mother—who was so relieved when her daughter was met with kindness and acceptance, not pity and annoyance—it meant the world.

Circling back to the question of why awareness is so important, if more people take the time to learn how someone with autism thinks and experiences their surroundings, the more people may embrace the neurodiversity, rather than shy away from the differences and get to know some truly interesting people.

References
American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Publishing.

Janzen, J. E., & Zenko, C. B. (2012). Understanding the nature of autism: A guidebook to the autism spectrum disorders (3rd ed.). San Antonio, TX: Hammill Institute on Disabilities.

Quill, K. A. (1997). Instructional considerations for young children with autism: The rationale for visually cued instruction. Journal of Autism and Developmental Disorders, 27(6), 697–714.

Rydell, P. J. (2012). Learning Style Profile for children with autism spectrum disorders. Retrieved from http://itunes.apple.com

Zenko, C. B., & Hite, M. P. (2013). Here’s how to provide intervention for children with autism spectrum disorder: A balanced approach. San Diego, CA: Plural Publishing.

About the Author
zenko_hhtpicasdCatherine B. Zenko, MS, CCC-SLP is a Florida-licensed speech-language pathologist who has worked with individuals on the autism spectrum for over fourteen years. She is an adjunct lecturer at the University of Florida Dept. of Speech Language Hearing Sciences since 2008 teaching a graduate-level Autism and Augmentative and Alternative Communication (AAC) course and has worked at the University of Florida (UF) Center for Autism and Related Disabilities (CARD) since 2000. While at CARD, Catherine has helped hundreds of individuals with ASD, their families and educators by providing consultation or training opportunities on a myriad of topics relating to best practices and ASD. In addition to her work at CARD, Catherine has co-authored Here’s How to Provide Intervention for Children with Autism Spectrum Disorder: A Balanced Approach, a timely resource for speech-language pathologists working with children on the autism spectrum as well as graduate students preparing to work with this demographic.

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