Marquis de Saydrah

Because I’ve moved from thinking, “I’ve GOT to blog that!” to doing it.

Is There an “Autism Threshold?” July 15, 2008

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.

Autie/NT spectrum and the bell curve of neurodiversity; visual description below.

Autie/NT spectrum and the bell curve of neurodiversity; visual description below.

 

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.”

Advertisements
 

7 Responses to “Is There an “Autism Threshold?””

  1. Maddy Says:

    There’s also ‘shadow syndromes’ where one might have certain elements that might be viewed as autistic traits. Afterall most of of the diagnostic criteria can be found in the general populace in a watered down version.
    Best wishes

  2. Most of the disorders have what is called a threshold. Before which the disease is not apparent and after that symptoms and signs are visible.

    The same applies to any disease causing agent.

  3. saydrah Says:

    Maddy: Wow, never googled that before! Very, very interesting. Thanks for dropping by– I knew I forgot someone when I was doing my blogroll *facepalm* I’m gonna fix that.

    RuralPhysician: I wouldn’t say Autism has a disease causing agent involved, though.

  4. shiva Says:

    Sorry for not finding my way back here until now. I’ve had HUGE numbers of emails about an autism conference to deal with, which have been taking up most of my online time.

    I’m really knackered now, but will (hopefully) respond properly tomorrow…

    Thanks for linking 🙂

  5. saydrah Says:

    Looking forward to your response, Shiva.

  6. shiva dan Says:

    OK, apologies for not getting back to you. I’ve been busy…

    (I’m off tomorrow to visit some friends, then go to a conference, then get back on Friday only to go away again for another week a couple of days later, so probably won’t be able to respond to further comments for a while…)

    Strangely, although i can often spot autism in others before speaking to them, i seem to elude some other people’s “Aspie-dar” – but, on the other hand, when i got my diagnosis, and told certain people about it, they basically told me they had known for years (which led to me thinking “why the hell didn’t you TELL me years ago then?”… i still don’t know the answer to that one). And i have thought people were autistic in the past who turned out not to be… tho they did have other conditions that “mimicked” it in certain aspects.

    Re the spectrum as you draw it: the “bell curve” kind of makes sense, except i don’t think there is a single, linear spectrum (which is one of the reasons i don’t actually like the term “spectrum” very much) – rather, i think that a more accurate way to represent it would be to have multiple, linked but not too fixedly linked, spectra, each representing a particular “strand” of difference – verbal ability, non-verbal communication ability, sensory acuity, attention span, accuracy of memory, etc, and for each individual to have a place along each of them.

    The difficulty is the way that they are linked, but not absolutely linked – being at the “stereotypically autistic” end of one spectrum makes one more likely to be at that end of other spectra, but definitely does not guarantee that they will be – in other words, it’s possible to have some autistic traits very strongly, while others only a little or not noticeably at all. The idea of a single spectrum leads to the assumption that “X can’t be autistic because ze doesn’t have trait Y”, even if ze has traits A, B, C and D. It also leads to the whole “mild/severe” thing, which i have several major disagreements with. (It also disregards the people who are neither autistic nor neurotypical…)

    I’m fairly certain that there are posts on Amanda Baggs’s blog, and maybe Joel Smith’s, that express my points a lot better than i could. Unfortunately i don’t really have time to look for them right now…

    Anyway, there’s no need to apologise for taking up my comments – i like getting comments, they make me feel validated in spending so much time and effort writing blog posts…

    (And i would say you looked a lot thinner than average in that photo, which was actually probably one of the things that made me think you might have been on the spectrum – very many autistic people either are very thin, especially in the face, or somehow look thinner than they are (which i think might be to do with atypical facial expressions affecting facial proportions). I hadn’t thought of overall posture giving that impression, but maybe it does. I certainly wouldn’t ever think about positioning myself a particular way relative to camera position in order to make myself look a particular shape…)

  7. […] is an extremely problematic automatic characterization for anyone not neurotypical (see “Autism Threshold” post for my and others’ speculation on why I identify as NT, but seem to fall into a […]


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s