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.

 

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.”

Forum Politics and the NT-ocracy (rant) June 28, 2008

Please forgive a brief (okay, I’m lying, it’s long) rant.

 

I like forums. Forums are a way to interact socially with a much larger number and more diverse group of people than I would normally see in real life. They’re also a source to get and give information, meet people with common interests, and discover interesting news I wouldn’t find elsewhere.

 

However.

 

(Rants always include a however)

 

There is something that, lately, has been grinding my gears about one forum in particular. I won’t name it or the administrator, since it’s not so much a problem with that forum as with the concept of forums in general, particularly large ones with many moderators. This forum is generally a very pleasant one, and the community, though united by a common interest, is very diverse in all aspects: Ethnicity, gender, neurology, body shape, political views, sexuality, everything.

 

However, the moderating body lacks diversity in one important aspect. There are, I believe, three female moderators, and five or six males. Most are older adults, and very nice people; one I know is younger, and a bit hot-headed, but generally friendly. One of the moderators is a person with a physical disability. However, though I’ve counted several members with Aspergers, Autism, ASD, ADHD, ADD, and other developmental disabilities, none of the moderators is a person on the Autism spectrum.

 

A conflict with the moderators on this forum has made me realize that this particular flaw in the moderation structure could be very problematic for members who aren’t neurotypical. 

 

A member much beloved by the community had to make the decision to take a loved one off life support. In a post expressing my sympathies, I complimented the strength of their relationship because they had discussed this possibility prior to his sudden illness– Every couple should be so lucky and so smart as to know exactly what each person would want in the event of such a tragedy. Many nasty battles are fought over this decision, in hospital rooms and courtrooms, because a person’s wishes weren’t communicated or put in writing. If anything good can be taken from such a heart-wrenching decision, in this case, it’s that she will never have to wonder whether or not she did what her loved one would have wanted.

 

Shortly after making my post, I was chastised by a moderator, who removed my compliment and told me it sounded like I was lecturing her and the rest of the forum, and that she didn’t need that right now. Apparently, to him– not to her, as she hadn’t even seen the post– my compliment on the strength of their relationship was “preachy.”

 

????

 

Huh?

 

I didn’t respond to the condescending message that notified me my post had been edited– I know many of the moderators are still skeeved off about an old R-word argument, and if I want to keep my friendships with more open-minded folks on the forum intact, I have to pick my battles. But this did get me thinking.

 

How often do people on the Autism Spectrum get told they’re “interacting inappropriately with others?” In my (limited) experience, one of the most common ways for a rift between an NT and an Aspie to happen is a compliment from the Aspie considered inappropriate or rude by the NT. That’s even tip #3 on LastCrazyHorn’s list of Social Tips for Aspies– From an Aspie:

 

“Find things about people that you like and complement them on it. But stay away from the really strange remarks like, ‘Oh, I love the way your shoes match your nose hairs.’ Not good. In fact, don’t mention hair at all–except that which is either on the face of men or on the top of the head for men and women.”

 

So, if, being an NT myself, I can deeply offend another NT with a compliment that I still can’t see the problem with, how hard must it be for someone with an ASD to give compliments within the NT-ocracy? An Aspie on the panel of moderators could stick up for non-NT members by noticing what “transgressions” could in fact simply be communication that differs from the expected norm.

 

Then there’s a double whammy– many of my friends who are on the spectrum have more internet friends than in-person friends. There are obvious advantages: No eye contact, no need to explain stimming to each new friend, and the chance to wait a few minutes and look again at something you’re about to say before you say it, for starters. I appreciate the advantages of online friendship greatly as well. I can have a deep conversation with an online friend while brushing my dog, blogging, and browsing Reddit all at once, which I certainly couldn’t do in person without causing offense.

 

However, what happens if you communicate in the way that comes naturally to you, it offends someone who doesn’t communicate that way, and they have the power to cut you off from a major social network in your life?

 

That’s when the NT-ocracy in an online community turns from annoying and sometimes offensive to truly discriminatory. Rules that depend upon the subjective evaluation of a person’s behavior or communication patterns are nearly always biased toward the middle of the bell curve, and that means a moderation team composed entirely of NT people isn’t likely to notice that the communication pattern they’re subjectively judging is that of someone with an ASD, not someone who is being rude or who typed before thinking.

 

And then– as Amanda Baggs points out– if someone tries to defend herself by explaining that people on the Autism spectrum don’t always communicate just like NTs do, she’s told, “You’re just using that as an excuse for poor social skills.” From Amanda’s post:

 

“I have noticed a trend online, which is for people to say to others, ‘You are not autistic/AS, you are just using that as an excuse for poor social skills or an excuse to be a jerk.’ I have an online friend who frequently gets this reaction, when she says something she considers just direct and someone else finds it insulting and flames her, and she tries to explain, only to get that response. Indeed, things like ‘Asperger’s is just an excuse to be socially inept’ or ‘people who use Asperger’s as an excuse’ have become givens in some parts of the Internet community. It is even accepted (with little to no apparent evidence) by some autistic people as fact.”

 

Is there a word for someone who, through ignorance and prejudice, separates a person with a disability from a valued network of friends for being direct, but being perceived as insulting, as a result of that disability?

 

Of course, that’s not to say that people on the spectrum don’t have friends they chat with face to face. However, I queried an Aspie friend while writing this about how he’d feel if he were banned from one large online community where he spends many hours each week, and his response was, “Angry. Devastated. Lonely.”

 

Is there a word for someone who, because of their own biases against a particular style of communication, makes someone feel angry, devastated, and lonely?

 

It happens constantly in online communities. In fact, in my younger (early teen) years, I bought the “Aspergers isn’t real, it’s just an excuse for poor social skills” bit hook, line, and sinker.

 

It didn’t help that someone with Aspergers was, at the time, an authority figure online who was grating on my nerves and the nerves of several others, and that the others annoyed with that individual saw no problem with suggesting that, “If you can’t communicate better, you should hire someone who can to handle customer service for your business,” or, “If you can’t deal with people better, you should find a different job,” or even a variant of the old line: “Asperger’s is just your excuse to be a tyrant.” I was pissed off enough at her not to bother trying to find out anything about Aspergers besides that it was a condition some people on the internet say they have, but some other people on the internet say it’s just an excuse to be a jerk.

 

So, yes, for a while, I was that person who doesn’t see the difference between an explanation and an excuse. And I have moderated forums where someone who identified him or herself as an Aspie was eventually banned from the community after offending other members. And I didn’t speak up. I didn’t push that button, but I didn’t speak up.

 

I can’t speak for people on the Autism spectrum. As Bev illustrated in square talk, it’s ridiculous and presumptive for an NT to even attempt to do so.

 

But I can speak to neurotypical people in a position of authority in online communities: Don’t buy the “Excuse to a be a jerk” crap. Before you cut someone off from their online friends for offending someone, try running a synopsis of the incident by someone you trust who has an ASD. Better yet, especially in large communities, appoint a moderator or several who’s on the Autism spectrum.

 

And I can speak to the Autistic community, to ask questions:

 

How can online communities be more inclusive?

 

How can a website where people congregate handle a situation in which a member with an ASD offends others by communicating in a certain way?

 

What measures can be taken to stop online communities’ moderation policies from becoming, “You must communicate like us,” and turn them into, “We welcome people who communicate like you?”