Improving Autism Cultural Responsiveness

SARA SANDERS GARDNER

Maybe you’ve been teaching autistic students for years, or maybe you’re about to have one in your class for the first time. Either way, thinking about autism as a culture and the communication and behavior implications of this social justice approach will support your efforts to have productive interactions with and among all your students, including the neurodivergent ones.

Using social justice as an interaction and instructional model means that, rather than attempting to manage or fit autistic students into an expected communication or behavioral pattern, you will instead attempt to understand them, provide accessible communication, and a classroom environment that values diversity in all forms.

As an autistic faculty member who directs an autism advocacy and access program at a large community college, and also provides training and consultation to a large technology corporation, as well as being the parent of an autistic software developer, I have the unique opportunity to teach, study, learn, and live with autism and autistic individuals, both at home and at work. I’d like to share some of the things I’ve learned about autism as a culture and as a disability, and talk about some definitions, myths, the everyday struggles with ableism, and, discuss how neurotypical (not-autistic) people can learn the communication style of autistic individuals so that interactions can truly become successful two-way endeavors.

Language

You may have learned that it’s polite or respectful to use person-first language when referring to disabled people. This isn’t always the case! Many autistic individuals (and other disabled people) prefer identity-first language, which incorporates disability as part of their identity. So, much as we might refer to a person as tall, thoughtful, or any one of a number of descriptors, so too do we refer to them as an autistic person, placing their autism as part of their identity. This is a matter of personal choice, and the best thing to do is to ask the individual which they prefer – person-first or identity-first language – if you find that you need to discuss their disability.

Definitions and Diagnosis

The American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5) describes autism in the form of deficits and severity of social-emotional reciprocity, nonverbal communicative behaviors, and managing relationships, marked by restricted, repetitive patterns of behavior, interests, or activities, and / or sensory sensitivities. For in-depth information see www.cdc.gov/ncbddd/autism/hcp-dsm.html. Viewing autism from this medical or deficit model leads us to try to “fix” our students – to mold them into a typically-behaving and -interacting student.

As more autistic adults share their experiences, a new model has emerged: the social justice, or neurodiversity model of autism. This model states that autism, while it can have many disabling features, is not at its core a communication deficit, but a communication difference – one that should be honored and respected. For more in-depth information see www.tolerance.org/magazine/summer-2016/a-new-frame-of-mind. This brings us to…

Autistic Culture

The Autistic Self Advocacy Network states it best on the website “Autism Acceptance Month” www.autismacceptancemonth.com/resources/101-3/autism-acceptance/autistic-culture/

Definition

Autistic culture is culture built around the ways of speaking, thinking, and acting that come naturally to autistic people, or which have been created in Autistic communities.

Description

Autistic culture is the culture created by and for autistics. Much of it has been developed in the Autistic community, while other parts of it have developed as a result of interactions outside of it. Autistic culture has been studied by cultural anthropologists.

Autistic culture has developed its own customs, traditions, and approaches to expression and social interaction. There are also events that are both a product of the culture as well as a venue to participate in it. It also includes distinctively Autistic art, writing, and idioms and vocabulary.

Autistic culture started developing in small pockets across the world in the 1990s, and, with the growth of the Internet, has become a world-wide phenomenon also known as the Autism rights movement (ARM) https://en.wikipedia.org/wiki/Autism_rights_movement .

Here are some additional links that you may find interesting:

General Etiquette and other thoughts: https://www.wikihow.com/Experience-Autistic-Culture

Autism Culture video: https://www.autismspectrumexplained.com/culture-of-autism.html

Communication

Karla Fisher, an autistic advocate, (www.facebook.com/pg/Karlas-ASD-Page-155369821204141/) describes autistic people as leaning in the direction of being “literal communicators” while neurotypical people lean in the direction of being “abstract communicators,” with a range of communication styles in-between the extremes. This means that many autistic students will be more literal in both their interpretations of others’ communication and in what they say to others. Our literal input, spoken without subtext, can often come across as blunt or rude, depending on the culture of your particular community.

One factor that plays a big role in this is the different way we handle non-verbal communication. For many of us, we simply don’t recognize it, or don’t recognize it in many situations. Since non-verbal communication covers a lot of ground, including implied meaning, this can leave us confused and misinterpreting meaning frequently. This is a two-way street, though, as neurotypical people frequently misinterpret our meaning and are confused by our communication.

The best “cure” for this is advocacy on both sides – simply ask for clarification. If we seem upset or angry, because of our “tone” or what we’re saying, ask us! If you sense that someone, autistic or not, is confused by abstract or implied communication, try adding a sentence or two that is more direct, and see if that is helpful. I’ve found that the most useful thing I can say when I’m confused is, “Could you please say that again another way?”

Disability and Myths

One of the biggest myths about autism is that it is purely a social disorder, and that with proper social skills instruction or mentoring, students can “fit in.” If it were that simple, then education and employment rates would be much higher. What’s true is that autism can affect a person across many areas.

Autism is classified as a Pervasive Developmental Disorder, and rightly so. Although the diagnostic criteria only looks at three areas that are behavior-based, autistic people can be affected by a number of co-occurring neurological and physical disabilities. Some research is examining autism as a movement disorder, for example: www.ncbi.nlm.nih.gov/pmc/articles/PMC3556589/

While not all autistic people are affected in all the below areas, many are affected in several, and it’s worth looking into when a student is experiencing difficulty in the classroom setting.

Possible Co-occurring Features

Anxiety
Auditory processing disorder
Depression
Difficulty with Prosody (tone of voice)
Disorder of Written Expression / Dysgraphia
Dyscalculia
Dyspraxia
Executive Functioning difficulties
Non-verbal Learning Disability (an argument could be made that all autistic people have this)
Obsessive Compulsive Behaviors (not necessarily rising to the level of OCD)
Prosopagnosia or face-blindness
Sleep disorders
Slower Processing Speed
Visual processing disorder

Other Myths About Autism Include:

The Asperger’s genius – the truth is that a diagnosis of Asperger’s includes people with average to above-average intelligence quotients, and autistic people have similar ranges of intelligence quotients to the general population, particularly when appropriate measures are given.

Autistic Savants – not all autistic people are savants, and not all savants are autistic. One in ten autistic people exhibit some savant skills, however, these skills are typically not the inordinate types of skills exhibited in the popular movie “Rain Man.”

Meltdowns and Violence – research has shown that violence and autism are not linked, and meltdowns are not a result of an autistic person trying to get their way. Typically, a meltdown, when and if it does happen, is the result of sensory overload, or extreme overwhelm, and it is most often experienced by the individual as fear and an inability to control their body. For many autistic people, meltdowns become manageable by adulthood. Sometimes, though, particularly as a college student is in a transition state, or experiencing sensory overload, a meltdown can happen on campus. Typically, the student will need a quiet, safe space to gather themselves before they can interact and problem-solve. More on this topic in an upcoming post!

Unfeeling autistics – although autistic people do generally show their feelings differently from neurotypical people, we do have feelings and we do care about others. Many autistics consider themselves to be empaths; meaning that they absorb the emotions of those around them, often to their own detriment.

Theory of Mind – closely related to the unfeeling autistic myth, the “Theory of Mind” myth states that autistic people lack a theory of mind and are unable to imagine what others are thinking. Research has shown that it is closer to the truth to say that both autistics and neurotypicals find it difficult to imagine what the other is thinking, even to the point that neurotypicals reject autistic people prior to even meeting them. www.nature.com/articles/srep40700

Ableism

Much as racism is part of daily life for people of color, ableism is part of daily life for disabled people, including autistic people. This includes internalized ableism or feeling as if we should be doing better at “fitting in;” not needing accommodations or support; not being disabled.

Ableism can take the form of microaggression in the form of “compliments” such as “you don’t seem autistic to me!” or “you must be high-functioning!” or even, “you’re so inspiring” and “so articulate.” (If these seem far-fetched, all these and more are said on a fairly regular basis to both myself and my students.)

Ableism is also experienced as over-helping, or even passing a student who hasn’t met the outcomes for a course. In the long run this is harmful to the autistic student, who isn’t given the opportunity to learn the course material, to their classmates who are given a wrong impression of their autistic peer, and, to the institution as well, because it is sending unqualified people into the workplace.

Even more overt forms of ableism can be missed by instructors. These can include neurotypical students refusing to include autistic students in projects and study groups, rolling their eyes, whispering about autistic students, or even moving their chairs away when an autistic student sits near them. It can be simply ignoring the autistic student. And there is outright bullying, including “hazing” for laughs and physical violence that happens also.

The good news is that as an instructor, you can make a big difference in the lives of all your students, and you’ve already started by reading about autism cultural responsiveness! You can learn even more by reading the many posts on this site and elsewhere written by autistic advocates and activists.

Sara Sanders Gardner

Sara Sanders Gardner is an autistic professional living in Redmond, Washington, near Seattle. Sara is the designer and Program Director of Bellevue College’s Autism Spectrum Navigators program, now in its 8th year, serving over 200 students. Sara also consults with Microsoft’s U.S. Autism Inclusive Hiring program, and leads training sessions with prospective managers and team peers of individuals hired through the program – discussing areas such as social justice, autism as a culture and a disability, and communication styles.

Autism 101: Autism Cultural Responsiveness for Improved Interactions