Autism Spectrum Disorders…Labels, Categories, and Confusion: Part 1

Organizational bins

(This post and this photo originally appeared on www.ocslp.org)

Gabriel could be one of Raphael’s angels with his curly locks and sweet full-lipped smile. Sitting at his TEACCH station, Gabriel whizzes through his sorting task with otherworldly speed. His classmate Vera, on the other hand, throws her work on the floor in frustration and begins a perfect recitation of the opening narrative from “Beauty and the Beast” while twirling her long red hair around each finger on her right hand. This reciting and twirling will not end without a tantrum until the entire repertoire has been repeated exactly four times.

I often think about Gabriel and his sorting. There’s comfort in sorting a mess into convenient containers, whether that mess is an overturned drawer, an in-box spilling it’s contents onto a nearby file-cabinet, or a mental tornado of “to do” items whirling in one’s consciousness at 2:00 a.m.

Sorting implies categories which imply labels which are mental constructs of anything and everything “out there” and “in here.” Categories arise when there are too many labels to manage. It’s a whole lot easier to ask your kiddo to “fold the clothes” instead of listing each and every item in the laundry basket.

Let’s get back to Gabriel and Vera for a moment. Gabriel has not uttered a word since he was 19 months, even though he had babbled delightful syllables containing a variety of sounds as an infant and could even say “ma” “da” and “no” on his first birthday. Gabriel independently communicates his needs/wants using PECS. Vera is highly intelligible and started reading at 2 1/2 but does not use language to communicate her basic needs unless she is prompted. Gabriel has “moderate-severe autism.” So does Vera.

These are two kiddos who share the same category of “autistic spectrum disorder” and the same sub-category of “moderate-severe.” Gabriel is also considered “non-verbal,” while Vera is considered “verbal.” Both kiddos have “sensory integration dysfunction” (another category), but Gabriel is “sensory seeking” and Vera is “sensory avoiding.” Vera is considered to have “mental retardation” (I really hope this label soon lands in the great big dumpster of offensive words). Gabriel, on the other hand, WAS thought to have MR, but his IEP team isn’t so sure about that anymore. Both have “behaviors” that interfere with their adaptive functioning.

Are you confused? Overwhelmed even? Yeah, me too.

To bend your mind a bit further, consider that these two kiddos are not the most severe, nor are they “mildly autistic” or “high functioning.” What happens when we include labels such as “Aspergers Syndrome,” “Pervasive Developmental Disorder, NOS,” and “Non-Verbal Language Disorder” (which by the way is NOT an autistic spectrum disorder and does NOT mean that an individual is non-verbal)? Confusion, confusion, and more confusion.

And now the American Psychiatric Association (APA) is proposing to scrap several of these labels altogether in exchange for “Autistic Disorder/Autism Spectrum Disorder” in the DSM-5 (more on that in my next post).

It’s no wonder that individuals, parents, families, and professionals find understanding, explaining, and treating autism so difficult. This “spectrum” of neurodevelopmental disorders (more on this too in my next post) is anything BUT clear-cut and defies convenient labels and categories.

As the saying goes, “You’ve met one person with autism, you’ve met one person with autism.” After working with at least 100 kiddos with an autism spectrum disorder and knowing at least 100 more, I have to wholeheartedly agree with this.

Debra L. Brunner, M.A., CCC-SLP works as a private speech-language
pathologist in Orange County, California and a part-time clinician at The
Prentice School, a non-profit day school for children with language
learning differences. Ms. Brunner’s blog, as well as information
regarding her private practice, can be found at www.ocslp.org.

Comments

  1. Zenzele Shakir says:

    I really appreciate this article. It was insightful and well-thought. I am a student in the SLP program at the Univ of California – Sacramento. If you are ever speaking somewhere I would like to come hear what you have to say. Not only am I student, I am a mother of a 5yr old daughter with autism.

  2. Thank you for your feedback. I sincerely appreciate your interest. I’m planning to post part 2 for this blog on my website within the week. Stay tuned.