What’s in a name? Autistic vs. Person with Autism
A long RAWR by wakingcanary
Recent ongoing discussion about how to refer to those on the spectrum, keeps going round and round. Many autistic advocates insist, and I support them, that ASD is a basic condition of neurological wiring–not something that can be separated from the individual. There is discussion and opinion stated all over the net on whether it is best to call someone “a person with autism” or “autistic”. I have a question to ask in response. When you meet new people do you have a name you like to tell them to call you?
I do. I have several. If I’m meeting someone I expect to know socially, I call myself Amy.
I’m fine with the person at the grocery store not knowing me by my first name, and wish they would stop with a simple thank you–without invading my personal space and trying to call me by name.
If I’m meeting people online, that name might change based on the topic of the group I’m joining. For example, you know me here as waking canary, but I have other online friends who know me as Ibiki Teishi (manga/anime) or Mollie (SciFi/Fantasy fiction) or mylinysy (chat/IM/twitter)–yet I am still (mostly) the same person under any of those names.
My students are given options of Dr. Alward, Professor Alward or Amy, and warned that they will be corrected if they try to call me Miss, Mrs. or Ms. It’s funny, because this isn’t something I will correct elsewhere, only on campus at my professor gig.
My family knew me as Mimi growing up, because I couldn’t pronounce the long A sound to say Amy. They still call me Meem, Mimous, Amos, Amos Moses, AmosNAndy…I’d throw a fit if a new acquaintance tried to call me any of those.
The point is not all my names and nicknames, but the fact that most of us have many names and many faces depending on the roles we play in other people’s lives. Part of how we like to refer to ourselves is set by our own identity, and what we prefer to highlight about ourselves.
My mitochondrial DNA can be traced back to an eradicated Miwok family group who had the misfortune of living in Placerville, CA at the time of the Gold Rush. I am 1/16th Native American–but it took a lot of years and scientific evidence for my mother to admit our heritage. She had a special interest in genealogy, and had done a lot of hard work tracing back all the family lines, yet she still could not admit it until the Genome project DNA test ‘proved it’.
Why had she been in such denial? Well, there was stigma attached to claiming her heritage, her blood. My grandmother was nearly expelled from school, because she was too dark to go with the white kids. Being Native American in the 20th Century west was to navigate a lot of backwoods prejudices. The emotional scars of losing one’s culture, language and family group–being told that all those things you had known were wrong or dirty or unacceptable–those left marks on all of us into the generations. I was an adult woman, pursuing a PhD in business before any of us would really admit it; I went on to become the fifth person of Native descent to earn an Accounting PhD.
Not long before graduation I had a History professor ask me whether I preferred being called Native American or Indian. He asked because much of the discussion in the autism community–arguments, hot feelings, frustration–could be found in the Native community as well over these terms: Native American or Indian. I felt put on the spot, because I knew that whatever I told this white man (in charge of educating white kids) would become part of the warp and weft of how he dealt with this sometimes touchy bit of language. I see the same thing in the Autistic vs. Person with Autism labels. Perhaps my response still stands.
I can’t speak for other people, but what I prefer to be called differs depending on who is doing the calling, and the context or tone of what they are saying to me. If a student were to call me Dr. Alward, but linger on Doctor until it sounds sarcastic, isn’t that really an insult? I’ve been called “Filthy Indian” before by people I barely met. It hurt. But I would be outraged if a more intimate friend took this approach. Context and intention is almost more important than the label then, I think.
Also, if I were being addressed by a group of old white prof types (similar to the man who had just asked me), I would prefer the more linguistically “clean” term of Native American. However, among my drum circle, we would say Indian (or NDN if you’re feeling tough). The Indian label brings up colonization, small pox blankets, Christopher Columbus, and any number of other unsavory historical connotations. That’s okay if its brought up by people who have also had that experience. It’s not okay to be reminded of it by people who did not share that history.
It’s uncomfortable to be reminded of that power imbalance by a bunch of people outside my group–especially by the ones who once held all the power. It’s especially uncomfortable if I don’t know the people I’m talking to well enough to know whether they support or renounce those dehumanizing issues.
This all reminds me of the discussion in the African American community, where preferred and claimed identity words have fluctuated along with social identity, power and acceptance. Words once tossed around carelessly in the 30’s would never be uttered today in mixed company. Even terms brought into vogue in the 70’s have fallen by the wayside for “cleaner” linguistics.
My friends of color tend to be more homey and comfortable with those identity words if you are a trusted and intimate friend, and more politically correct if you are just an acquaintance. One friend would likely refer to others like himself as African American if he didn’t know you. But between he and I, he’ll tell me that they are Black. Since I know him pretty well, I can and have playfully referred to him as Dark Chocolate, and he refers to himself that way with a select set of friends. Yet, it’s a privilege of intimacy that shouldn’t be taken if intentions are not clear. I’m sure he’d be offended if the white lady at the grocery store referred to him that way; he’d give her a long silent look and say, “do I know you?”
These issues simply highlight the reason ‘appropriate’ labeling words for beingspectrum have become such a hot topic at this very point in time. Before now, we have always had to cope with “fitting in” or pay the consequences through institutionalization, living in the attic or being completely isolated–or abused or murdered. Only in the last few decades has there been a notable body or research on ASDs. For the first time, spectrum individuals are learning that–despite being dispersed particles in the great ocean of humanity–we are not the only ones experiencing and struggling in the very unique ways that we do. Think how phenomenal this is! We are, for the first time in human history, able to see that we are not single odd humans (1 out of every 88–or whatever number you like), but part of a GROUP.
That’s a beautiful thing.
The people who feel most isolated by neurotypical (NT) society are just now finding out that they are NOT alone. Yes, there are others like you! And now we can see that we don’t have to just accept how any of us have been treated. As a group, we can find voice and we can demand our human rights. We can stand up for a shift in power that finally allows Autistics to be seen as fully-formed human beings–in need of and requiring the same basic rights, dignity and respect as should be afforded every single human being on this planet.
Historically, some do not believe this to be true. Some believe that Autistics are not aware of their surroundings or the world around them. I’m not sure why they come to this conclusion, perhaps it is because we often have to seek alternative communication avenues compared to our NT brethren. These are the same people who will talk about an Autistic as if they are not present, or treat them as if they have no feelings simply because: they have no words, or don’t make eye contact, or need to rock to concentrate on what is being said, or any number of other biases. They’re out there. Shoot, I also used to have people talk about lazy, drunken Indians if their backs were to me at a party.
This is the wound, my friends. Frightened parents are told by medical professionals all the terrible handicaps that come with the ASD diagnosis, but do they usually stop to tell the stories of awesomeness and superpowers–the gifts–that also are part of the package deal? Is it any wonder that many of these parents seek for a “cure” at all costs? That they believe their child needs to be “normal” to be okay? That…they stop seeing their child as a human, but only see the diagnosis? This is the argument of self-advocates who wish to be called a Person with Autism rather than Autistic. They want to be seen as an individual, not as their diagnosis.
However, I find other members of my group owning the term proudly: I am Autistic. They offer that the different wiring that manifests what the Psych profession has termed ASD is so entwined with how they experience the world, it cannot be separated from them as an individual. These folks often claim that they have no need for a cure and there is nothing wrong with them, they are simply different.
I have to agree with this point of view, and I have accepted my autism whole-heartedly–just as I embraced my Native roots, and my gender identity as a woman and mom. I am all of these things; not a single one of these identities fully captures me, yet each does indeed tell part of the tale. Also, just as I refer to myself as Native American, of Native Descent or Indian fairly interchangeably, I also will call myself a person with autism–if, and only if, the audience seems to already accept me as a human being.
Funny, isn’t it? I know that those who advocate “person with autism” is to intentionally get others to recognize their humanity first and disability second. Who doesn’t want to be seen as human? Now, maybe this is the frustrated activist talking from deep within me, but until we have received greater societal recognition as being full-fledged human beings, then I am apt to be very vocal about my identity within the spectrum–confrontational about it even. Perhaps this is to show those so desperate for cures that we can be fabulous just the way we are. Perhaps this is to empower us to accept our Autism and fully embrace our identities–we are not alone and we are okay. I am autistic and I WILL make you treat me as a human being. Deal with it.
I am autistic. I do not need a cure any more than my Native genes need to be extracted. Those same genes that let me tan easily are the same ones that make me more likely to develop diabetes. Still, my DNA does not need curing, nor would I even consider it–and any one who suggested it should have the good sense to be ashamed.
I look at my ASD the same way.
A lifetime of being told the way I experience the world was ‘wrong’ has given me woes it will take my therapist and I a lifetime to unravel. Yet, the root cause that still effects my life is a basic difference in neurology that allows me to experience the world differently than most of humanity. It makes meeting new people or making words difficult to impossible sometimes, but it also fills me with superpowers like a near photographic memory. Neither the costs or the benefits should be taken from any of us. This neurodiversity belongs to each individual, to take if from any one of us is to take our identity, our dignity…our humanity.
In the days of the civil rights marches, African Americans stood up and said “no” to terms I can’t even make myself type out here, and also rejected more polite but loaded terms, like “colored”. Will everyone agree with whatever term the current discussion settles on? Not at all–and as people grow and change, as acceptance increases and prejudices dissolve, so will our identifying terms need to renew and change.
Part of the evolution of becoming a group with an identity of our own creating is to debate and discuss which words empower and which ones degrade. The next step is to demand others adopt the identity words we prefer–just as I warn my students not to call me Mrs. It is an unfortunate, but terribly normal, part of human existence that those who have been stripped of rights or humanity must force the point and demand their dignity be granted. Those who have failed to see humanity in another group’s members generally need to be confronted with their ignorance or assumptions before any productive change sticks.