Shiva mentioned recently that zhe thought from my photos on my blog that I was a person on the Autism spectrum until reading a post in which I identified myself as neurotypical. This got me thinking (and taking up space in Shiva’s comments section– sorry!) about the behaviors and opinions of mine which are similar to those of people on the Autism spectrum, as well as the question of “diagnosing” Autism/Asperger’s/ASD in general: Specifically, where’s the point at which the benefits of a diagnosis, such as accomodations in school or benefits from insurance companies, are sufficient to justify gathering a set of behaviors together and calling them Autism/Aspergers/ASD? Is there an Autism threshold? Where does the spectrum change from the Autism spectrum to the NT spectrum, one end of which potentially adjoins the Autism spectrum?
Certainly, some people are easily identifiable even by neurotypical people as Autistic. Others are “passing” as neurotypical but are often recognized by others on the spectrum. Then, there are people who just seem to surprise others with their behavior, but who most NT people pass over as “weird,” rather than the lightbulb going on that says, “autistic.”
As Amanda Baggs said *link is to Google cache because her site is down temporarily,* “We’re (Autistic people are) the person who everyone calls “retarded” who suddenly comes out with things that seem very intelligent, and the person everyone calls a “genius” who can’t do some really simple stuff.”
But then you have the NT people who do Autistic-like things, but who are never given an autism-spectrum label. For example, stimming. I’ve heard in various places that 10%, 25%, half, or nearly all NTs stim to some degree, but that NT stims just happen to be more socially acceptable. I found an NT blogger with an Aspie partner who puts it well: “NT stims tend to increase with greater anxiety, discomfort, or boredom. Though most are ‘socially acceptable’ in their style, they can become socially unacceptable if done to excess, because they are distracting and signal discomfort.” NT stims include tapping, leg bobbing, chair rocking, hair twirling, zit popping, head scratching, shifting weight side to side… all sorts of things that NTs see as normal, and which are normal, but the jump is rarely made from “My neurotypical stims are normal,” to, “Autistic stims are normal; they’re more obvious, and sometimes self-injurious, but they’re normal.”
I also think that NT stimming differs from Autistic stimming largely in that NTs are more able to inhibit stims– some of the typical Autie stims like rocking or hand flapping are just as appealing to small NT children as small Autistic children, but NTs develop a greater capacity for identifying situations in which these stims won’t be perceived as acceptable. For example, an NT person who stims by staring at fan blades might do so while waiting for an entree at a restaurant by herself, but not during a business meeting with 20 corporate suits. A stim that’s rarely, if ever, socially acceptable might be suppressed entirely: For example, headbanging. Or, an NT person who likes to headbang might channel it into doing so at concerts where that behavior is expected.
Another behavior typically associated with autism, but frequently seen in NTs, is avoidance of eye contact. Many NTs avoid eye contact but don’t associate that avoidance with the autism spectrum. “I’m shy,” or, “I just don’t like to make eye contact with people I don’t know well,” are frequently-used explanations for the avoidance of eye contact by an NT. I think Shiva perceived me as autistic from my photos because I avoid “eye contact” with cameras instinctively unless I’m thinking very consciously about looking right into the camera lens. That results in my looking down in a lot of my photos, or looking up in some– usually, the weirdest photos of me are the ones where someone said “Chin up!” and I tipped my chin up, but my eyes followed it up, and I end up looking over the camera. When a person looks at a photo of another person, the viewer’s eyes are in the place of the camera lens, and one perceives a photo of someone looking away from the lens as a photo of a person avoiding eye contact with the viewer.
My posture and positioning in photographs may also appear autistic; however, I’m not familiar enough with the body movements typical of autism/Aspergers/ASD to explain that one. I do trend away from posing facing my body straight toward the camera for photographs, but I think that has more to do with a long history of hearing about my thighs and hips being larger than average than anything. You can see from my photos that I’m of average weight, but I have a pear-shaped figure like my mother’s, and “affectionate” (read: needling) comments from my father about her legs and behind affected my own perception of my body shape. Then there’s the acting classes– “Hollywood stars stand at a thirty degree angle for red carpet photographs, with one leg in front of the other, because that angle is slimming.”
So, back to my initial question– when is a collection of behaviors associated with Autism sufficient to warrant a label or diagnosis? My initial impulse is to say, “When those behaviors impair the person’s ability to participate in NT-dominated society,” but that’s pretty subjective also. I don’t think I should have a diagnosis– I think I’m just one of many neurotypicals who don’t suppress Autism-like behaviors as readily as most, and that my bookwormness has sort of a chicken and the egg relationship with my social awkwardness. But have I benefited from the Autie/Aspie/ASD blogosphere and community? Sure. So, maybe someone who isn’t impaired significantly could still benefit from being assigned a label if it comes with encouragement to explore that community and culture. So, maybe, “When that person finds a sense of community and acceptance among autistics/aspies that they do not feel in communities of neurotypicals.”
It’s not an easy line to draw, and I wonder if perhaps the difficulty of making that determination is responsible for the enormous numbers of self-diagnosed Aspies roaming the internet, who identify as Aspies but haven’t ever seen any type of professional to confirm that label. I don’t know that professionals are really more qualified to diagnose Asperger’s Syndrome than other Aspies, since the Aspie-dar some people have (like Shiva) is sensitive enough to detect commonality even in people who identify as NT but who fall slightly closer to Aspergers/Autism than average for NTs.
Stigma comes with a diagnosis, but so does self-awareness and the availability of community support and community-based learning. So, where’s the line? When should a parent refer hir child for a possible autism-spectrum label? When should an adult self-label or see a professional to talk about the possibility of an autism-spectrum diagnosis?
Here’s a rough, graphical representation of how I see the Autism spectrum, the NT spectrum, the connection between the two, and me. I realize this is most certainly flawed and may well reveal some of my own unconscious biases, but I’d appreciate if others would share their thoughts on how they perceive the differences and similarities between self-identifying NTs and self-identifying Autie/Aspie/ASD people.
Please click to access the full image; wordpress cuts it off and shrinking it loses the text.
Visual Description: A red line representing the Autistic spectrum connects to a blue line representing the neurotypical spectrum. Below, a purple line draws a rough bell curve showing the most people toward the center of the NT spectrum. An X representing me is about one-fifth of the way toward the right on the NT spectrum. Toward the far right is “very social and extroverted, no autism-like traits” and to the far left on the Autistic spectrum is “Autism affecting mental age and social interaction, LFA label, most or all traits associated with autism.”