The Culture of Autism: Clues to Causation of Crises and a Source for Solutions
By Pamela Sikorski, CPI Global Professional Instructor
I had the opportunity during this last year to spend a few weeks traveling internationally to places with cultures very different from what I am used to experiencing on a day-to-day basis. Although I had a wonderful time, words I can also use to describe those days include mysterious, confusing, bewildering, curious, and quite overwhelming at times. I frequently found myself thinking:
“I wonder why they do that.”
“What could that behavior mean?”
“How do I clarify what I want or am looking for?” and
“Do I seem as unusual to the people I’m interacting with as they sometimes seem to me?”
Those reflections made me think about how life can sometimes be perceived and experienced by someone with an autism spectrum disorder.
The TEACCH Program, a Division of the University of North Carolina Department of Psychiatry, is known for its concept of the “Culture of Autism” as a way of understanding the characteristic patterns of thinking and behavior seen in many individuals with an autism diagnosis.
The TEACCH website references 10 specific pieces to this concept:
A preference for/strength in visual processing.
Attention to details but difficulty understanding how those details fit together.
Difficulty combining ideas.
Problems with attention, such as being distractible or making transitions.
Communication problems, especially in the area of the social use of language.
Difficulty with time concepts.
Attachment to routines and related generalization difficulties.
Strong interests and impulses.
Significant sensory preferences and dislikes.
In CPI’s renewal course for Certified Instructors, called Autism Spectrum Disorders: Applications of Nonviolent Crisis Intervention® Training, this is simplified to five categories encompassing these pieces: social interaction differences, communication skills, repetitive/restrictive patterns of behavior or interests, sensory processing differences, and cognitive processing differences.
I have found this Culture of Autism concept to be very helpful in exploring what can lead to a crisis for someone with an autism spectrum disorder as well as to point me in the right direction when I’m looking for person-centered prevention and intervention strategies. Dr. Gary Mesibov with the TEACCH program writes, “Understanding autism is the foundation of our effectiveness.” We want to understand people as they are, with all their strengths as well as challenges, and build respectful supports around where that individual is functioning.
My cross-cultural experience was an important and clear reminder that cultural differences do not mean one is better than another or that one is right and one is wrong; “normal” is relative and it’s not the goal for everyone to fit a certain mold. It was also evident how much variation there can be across a particular culture. One of the joys of cross-cultural travel is to grow awareness of and appreciation for those differences.
Formally, the word “culture” means shared patterns of human behavior; it affects the way we think, eat, dress, work, understand the world around us, recreate, communicate, and interact with others. Even though autism is not truly and technically its own culture, it is helpful to use this concept as an analogy.
TEACCH recommends that staff working with the population view themselves as cross-cultural interpreters—meaning someone who understands both cultures and is able to translate the expectations of the neurotypical environment to the person with autism so that person can function more easily and successfully, as well as help neurotypical individuals to better understand a person with an autism spectrum disorder. Dr. Mesibov writes, “An effective staff member is one who can empathically, helpfully, and positively guide a person with ASD in our confusing and difficult-to-interpret culture.”
Very similar to this strand of thought is what is known as the Neurodiversity Movement. Many self-advocates, along with others, promote looking at autism as an alternative way of being, rather than as a disability or illness. Self-advocate Ari Ne’eman, in an interview with Andrew Solomon, was quoted as saying, “We can succeed and thrive on our own terms when supported, accepted, and included for who we are.”
Many others have expressed the sentiment along the lines of autism being a part of who I am and not something I have.
As a Lens
Let’s look at how that Culture of Autism can be a lens through which we consider concepts taught in the Nonviolent Crisis Intervention® training program. In Unit V of the course, we explore the concept of Precipitating Factors, defined as the internal and external causes of acting-out behavior over which staff have little or no control. When we think about what can trigger a crisis for someone with autism and serve as an antecedent to behavior, we may want to start by considering and recognizing what could be rooted in the Culture of Autism.
Was the person just given multi-step directions verbally, with a staff member failing to take into account that person’s preference for visual processing, which then led to the individual being confused and overwhelmed?
Has increasing anxiety come about because that student’s teacher moved furniture in the classroom, added another desk, put up a new bulletin board, or did not put something back in the exact spot it had been in previously?
Did staff not give any warning about an upcoming transition in a person’s schedule or provide enough structure during that transition period, which led to property destruction and aggression toward self/others?
Is the person experiencing and expressing frustration and agitation due to an inability to communicate wants and needs clearly?
The categories of the Culture of Autism can be a checklist to help us to unravel the picture of the “why” a behavior occurs. Their focus is not just on what’s specific internally to the person with ASD, but many of those categories relate to the environment— something staff can have a great deal of impact on.
The framework of the Nonviolent Crisis Intervention® training program is based on the CPI Crisis Development ModelSM. Knowing about the predictable patterns of behavior often associated within the Culture of Autism can help staff choose the most appropriate interventions based on the levels of the Crisis Development ModelSM.
Here are some examples of how this might be applied:
When being Supportive to alleviate Anxiety for a person with autism, staff may want to ensure that person has ready access to a variety of sensory-oriented items and that activities fit his or her specific preferences (e.g., color, texture, movement) so the individual can self-soothe or have something to focus on that distracts attention from the source of anxiety.
When being Directive in response to Defensive behavior, staff could consider using a visual choice board with two options, a First . . . Then sequence card with icons depicting the next two activities, or modifying directions by breaking down a task into smaller pieces and giving only one of those pieces at a time.
If we know an individual is likely to or has the potential to get to the level of being a physically Acting-Out Person, we prioritize alternatives to physical intervention by taking environmental precautions, securing potential hazards/weapons, and clearing the space of other clients/students.
At the level of Tension Reduction, when we have an opportunity to build Therapeutic Rapport with the person who was in crisis, we can meaningfully engage the person in the debriefing process through drawing, social stories, or the use of emotions scale tools/visual aids.
Keep in mind, our goal is to prevent a crisis whenever possible. Early recognition of and being proactive about potential triggers rooted in the Culture of Autism, as well as seeing and making the most of strengths associated with that culture, will help put us on the right path to achieving that goal. A positive relationship with those in our care can never be rooted in coercion, force, or an overemphasis on deficits. We cultivate and capitalize on a person’s abilities and interests so motivation to work productively together on something is high.
I found on my trip overseas that often the journey to understanding people from different cultural perspectives requires both sides to make accommodations and meet at a point of compromise in the middle—somewhere that works for everyone. That same lesson can translate into the work we do with individuals on the autism spectrum.
“We all live with the objective of being happy, our lives are all different and yet the same.” —Anne Frank
“Differences challenge assumptions.” —Anne Wilson Schaef
“Culture is the widening of the mind and of the spirit.” —Nehru
“There is nowhere you can go and only be with people like you. Give it up.” —Bernice Johnson Reagon
Crisis Prevention Institute. (2005). Instructor Manual for the Nonviolent Crisis Intervention® training program. Milwaukee, WI: Author.
Mesibov, G. B. (n.d.) http://www.teacch.com/whatis.html. Retrieved online 1/21/2010.
Mesibov, G. B., Shea, V., & Schopler, E. (with Adams, L., Burgess, S., Chapman, S. M., Merkler, E., Mosconi, M., Tanner, C. & Van Bourgondien, M. E.). (2005). The TEACCH approach to autism spectrum disorders. New York: Kluwer Academic/Plenum.
Solomon, Andrew. (2008). The Autism Rights Movement. Retrieved online from http://nymag.com/news/features/47225/
Originally published in the Journal of Safe Management of Disruptive and Assaultive Behavior, March 2010, © 2010 CPI.