By Lydia Wayman
In William Stillman’s February, 2014 article on the Huffington Post titled Autism: A New Cultural Competency, Stillman uses the term Autism Cultural Competency to refer to the idea that the time has come for our culture to build its competence in how it approaches autistic people. He says that our culture misunderstands and misinterprets those of us whose brains cause us to behave differently than most, and that we would do well to learn to make “compassionate accommodations” for those with differences.
I could not agree more with Stillman’s suggestion. Yet, not in any kind of opposition but more of an altogether different direction, I read the words Autism Cultural Competency and took them to mean something slightly different. What if—not instead of building our culture’s competency in autism but, in addition to it—we helped parents and professionals to build their competency in autistic culture? What would be the result of an approach to autism that was founded on respect for the cultural mores and codes of autistic people?
Anyone who has spent time around a group of autistic people knows that we do, indeed, have our own culture. As an autistic person, I try to decode the way our minds work in each of three areas so that parents come to an understanding of our ways rather than look at us with confusion, pity, or an aim to “fix” us. Through this new understanding, parents come to realize that a relationship with an autistic person should be based on respect for our ways, just as the relationship with a person from another country deserves respect for their own culture. I define autistic culture as having three components: our developmental trajectory, the way we relate to other people, and the way we relate to the world around us.
First, the autistic developmental trajectory directly informs the way we establish our culture. Autistic people do not have a delay in development. If that were true, we would follow the typical path but do so years later than typical people. Rarely is this true. Instead, we follow an altogether different path of development, one in which we gain skills in an out-of-order fashion, display amazing gifts and surprising deficits, and in which we tend to have bursts of developmental followed by periods of lull. As an autistic young adult, I am a great example of this uneven progress; I am finishing my Master’s degree in English and creative writing, yet I cannot cross a street without help, struggle with independent living skills, and possess a strong affinity for anything Disney or Hello Kitty. This spike-and-valley development may be atypical for most people, but it is a totally typical way for an autistic person to develop and sets the stage in each individual for the culture we build together.
This different trajectory means that autistic people do not relate to other people in a typical way. In groups of spectrumites, there are several differences in our actions First, there is a deep respect for one another’s needs. Some of us are very highly in tune to others’ discomfort; some of us aren’t, but, in that case, the moment a person speaks up about any kind of problem, whether physical, emotional, or sensory, the group dynamic immediately changes and attends to the person’s needs. Autistic people also tend to relate on different levels. Often, we prefer to communicate via computer chat, because it allows us to express our thoughts more clearly and relate to the other person. We have built lifelong friendships over Facebook. When we are together in person, we tend to be quieter (unless a topic of special interest comes up, of course!). We know the value of quiet presence and support. We attract stares when we’re in groups, and I want to say to those staring: Come join us, and find out what you’re missing. Many parents put their children in social skills groups to learn to socialize like typical children; there is value in learning the skills needed to get by in this world, but, out of respect for autistic culture, it is important to allow the child opportunities to socialize like the autistic child he is, with other autistic children.
Finally, autistic people relate to the world around us in a unique way. We are highly sensory-based in the way we interact with our environment. We smell toys, pet cats with our faces, and spin just about anything, including ourselves. Parents often seek to teach us to play with our toys the right way; I cannot fathom why there is a “right” way to play and to have fun, when play is about learning through fun experiences and fun is clearly based on individual preference. As an autistic person, it is important for us to learn through our senses, because having the ability to calm ourselves through them is a key skill for an autistic adult. We cannot stim the day away, but stopping our stimming so that we can listen and learn is actually doing more harm than good; our stimming allows us to calm our bodies so that our minds can engage.
The time has come for parents and professionals to become competent in autistic culture and build relationships based upon it; the result will be a sense of peace for the parent, a sense of contentment for the child with who he is and how his mind works, and a much more positive relationship between the two of you.