Divergence and Diversity

There are two terms I sometimes see people get mixed up when talking about autistic (or otherwise non-neurotypical) people. Those terms are neurodivergent and neurodiverse (used as adjectives), or neurodivergence and neurodiversity (used as nouns). Others have explained the differences before, of course, but I wanted to walk through my own thinking on the matter.

Neurodivergent is used to describe an individual (or homogeneous group) whose neurotype diverges from what is considered typical. There are several ways in which to be neurodivergent: one might be autistic, ADHD, or dyslexic, to give just a few examples. Neurodiverse would then describe a group of people with a diversity of neurotypes represented.

So an individual would not be considered neurodiverse — she would be neurodivergent, and possibly part of a neurodiverse group. But if a group consists solely of individuals with the same type of neurodivergence, it wouldn’t properly be called neurodiverse. A monocropped field of some rare strain of wheat might be different from the norm, but it is still not a diverse ecosysem.

A similar distinction holds for the noun forms of the words: neurodivergence describes a particular neurotype that is different from neurotypical, while neurodiversity is created by the presence of multiple different neurotypes. So the former describes an individual neurotype, while the latter describes a group with more than one neurotype included (such as the human race as a whole).

As a brief aside into another language peeve of mine, it should become clear from considering these terms that not being autistic doesn’t necessarily make someone neurotypical; they could be otherwise neurodivergent. That’s the value of the word “allistic,” which explicitly means “non-autistic.” Neurotypical people are allistic, but not all allistics are neurotypical.

Actually, to pick a few more nits, it’s debatable whether any individual truly is “neurotypical.” Typical, like normal, is a statistical thing; the “perfectly typical” brain probably doesn’t exist in the real world, and certainly there are variations among people who would all be considered “neurotypical.” My therapist likes to use the phrase “more neurotypical,” which I think is more accurate, and I also like Luke Beardon’s references to the “predominant neurotype,” or PNT, in Autism and Asperger Syndrome in Adults. Treating it as simply that which is most common takes away some of the lingering associations with what is “normal,” which is usually a short step away from what is “proper” or “correct.” It still ends up being the baseline from which other neurotypes “diverge,” but at least it’s a step toward seeing our differences as part of a healthy, diverse human ecosystem.

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On “The Spectrum”

I like the phrase “autism spectrum.” I use it in the tagline of this blog (“Days in the life of an adult on the spectrum”), and “on the autism spectrum” (or just “on the spectrum”) is my go-to substitute for “autistic” when I want to switch things up a bit. But I have to admit that the spectrum metaphor has some major problems.

The main one is that the idea of a spectrum calls up things like the electromagnetic spectrum, which gives the impression of something linear. Visible light falls within a particular range, for example, and each color has its place; it either has this wavelength or that one. We can speak of high-frequency or low-frequency radiation, and relate different types of energy by where they fall with respect to each other.

So people treat the autism spectrum as similarly linear, through the use of functioning labels and phrases like “mild autism” and “severe autism.” The spectrum metaphor is generally seen as representing functioning level (although, as this article in Disability Studies Quarterly points out, it was originally framed in terms of impairment level, which is exactly the opposite), but the trouble is that one’s ability to “function” is not something that is easily (or consistently) located on a linear scale. It can’t be directly measured, and usually isn’t even well defined.

So there are several problems with assigning functioning labels (and thus a “position” on the spectrum) to an individual. One problem is that one’s ability to function is constantly changing, and is often environmentally dependent. Another problem is that someone may be “high functioning” with regard to some “functions” but not others. In fact, as that same article (which I very highly recommend reading in full) points out, differences in “functioning” levels are not just differences in intensity, but also differences in kind; two people might both be labeled “low-functioning,” but for very different reasons. So there is a huge problem with trying to map functioning levels as if they were a single, sliding-scale variable like wavelength or temperature, when in reality, they are multi-dimensional and not conducive to being collapsed into a single line.

Then there is the fact that collapsing functioning levels (or, conversely, impairment levels/support needs) into a single line seems inevitably to lead to a hierarchy of value, wherein the “higher functioning” are seen as better. And ironically, labeling the ends of that line creates the binary categories of “high(er) functioning” and “low(er) functioning,” which begins to erode the very notion of a spectrum condition in the first place. Thus we end up with arguments about whether “high-functioning” autistics can have insight into the experience of “low-functioning” autistics, as well as a general attitude that treats “high-functioning” people as needing no support, and “low-functioning” people as having no strengths.

The spectrum metaphor has generally appealed to me as a rhetorical device, but I do think it should be improved or replaced. I really think it needs to be non-linear — but the funny thing is, as I was planning out this post I realized that when I think of the autism spectrum, I picture the spectrum of visible light, but I picture it like a circular color picker wheel:

Circular color wheel

 

I don’t know if I’ve always thought of it this way, or if I was influenced by a memory of this cartoon — I read it a while ago, but hadn’t thought about it again until I looked it up for inclusion in this post — but I like it. It takes away the hierarchy, and hints at places of overlap between “high” and “low” functioning levels. I also like the way the “Aspie quiz” presents its results as a multi-axial mapping of traits, like this:

 

 

Example results from the Aspie quiz, arranged in a circular spiderweb.

So, while I don’t have a specific proposal for a metaphor to replace “the spectrum,” I think it should be something like those: non-linear, multi-dimensional, and complex enough to really reflect the variety of autistic experience. Any ideas?

Identity First

As I mentioned in my last post, I have had a post about so-called “person-first” language percolating. This will likely not be my only post on the subject, but I at least want to begin formulating my thoughts on the matter — partly because I expect that this will come up as I begin my studies in human services, and I want to have at least some thoughts lined up.

Let’s start with some definitions. “Person-first” (or “people-first”) language is a formulation used in many branches of human services, education, etc., wherein the individual’s disability or condition is expressed second, after some noun describing the individual: person with autism, for example. A common alternative is called “identity-first” language, which uses an adjectival form of the disability/condition before the noun: autistic person, to continue the example.

The way it is usually presented, the argument for “person-first” language is that it emphasizes that the individual is, well, a person first, and then their condition or disability. It puts forth the notion that a particular attribute is not the person’s identity, but more of a secondary trait. People who insist on this formulation often say we should not let our disability/condition/etc “define us.”

But here’s the trouble: it’s not up to others to decide what defines us. Many of us do consider autism part of our identity, and not as something separate (or separable) from who we are. It pervades our entire way of thinking, communicating, and viewing the world. “Autistic” describes the type of person I am; autism is not some incidental trait I happen to have.

Let me expand on that a moment. My last post consisted of screen shots I took of Google auto-complete search suggestions for various examples of “person-first” language. I found similar suggestions offered by Yahoo’s search engine, as well. Essentially, I wanted to convey a sense of the sorts of things people use this type of phrasing for — in other words, what sorts of things are seen as something one “has” rather than something one “is.”

Looking at those examples, I generally do not consider autism to be in the same category as other things people “have.” Many of these things are temporary conditions: having a fever, for example, or having braces. Autism is not temporary; it is lifelong. Others are things that do not have easily-created adjectives: “children with hair loss” cannot easily be changed to “hair-loss-experiencing children,” or some such. Autism has a ready adjective: autistic. Still other examples are physical traits that could often go either way in terms of language: “people with green eyes” vs “green-eyed people.”

That last one I could make a case for; mixing up the language between “autistic people” and “people with autism” isn’t intrinsically negative in my mind. After all, some people on the spectrum do not consider autism a part of their identity, and prefer person-first language — that’s fine, too. I am entirely in favor of people using whatever language they prefer about themselves. What I do not appreciate is the insistence that only certain language be used about a group of people — and especially not by people who are not in that group themselves.

(I am also in favor of varying one’s language in the interest of euphony, which frankly is another peeve I have when it comes to insisting on person-first language all the time. It’s clunky.)

But here’s the thing: when it comes to eye color, most people don’t, ahem, bat an eye over one’s choice of phrasing. You could say “blue-eyed” or “with blue eyes” and frankly I don’t think most people would notice. People only insist on “person-first” language when the characteristic in question is something stigmatized, something that they think we should distance ourselves from. They say this phrasing helps remind others that we’re people first, because people will otherwise not think so.

A recent article in the Journal of Child Psychology and Psychiatry highlighted this fact, and suggested that the insistence on “person-first” language may serve to accentuate stigma. Where the prescription for person-first language was intended to apply to everyone, it is used more frequently for people with disabilities, and “…is most frequently used to refer to children with the most stigmatized disabilities.” Because of this, it actually highlights the stigma attached to certain conditions, and helps to perpetuate it.

I found this paragraph particularly telling:

“Furthermore, children with more stigmatized disabilities are more likely to be referred to with gifted person-first terms (e.g. gifted children with autism), whereas children with less stigmatized disabilities are more likely to be referred to with gifted identity-first terms (e.g. gifted blind children). For children with two disabilities, the more stigmatized disability is more likely to be referenced with person-first language (e.g. blind children with autism, 94%), whereas the less stigmatized disability is less likely to be referenced with person-first language (e.g. autistic children with blindness, 6%).”

As I said before, I have no quarrel with people who choose person-first language for themselves. I also have no problem with using a mix of language for the sake of variety (though I prefer “on the autism spectrum” as an occasional alternative to “autistic”). But I think the institutional insistence on using only “person-first” language with regard to autism is marginalizing — especially considering that it has been repeatedly demonstrated that there is a widespread preference for “identity-first” language among autistic people ourselves

Too Many Voices

If you’re like me, you probably know how it feels to get overwhelmed when too many people are talking at once. Maybe it’s a relaxed group conversation, or an animated classroom discussion. Maybe you’re trying to have a conversation in a crowded restaurant. But whether or not the majority of voices are directed at you, just the sheer volume — both the volume of noise and the volume of words/thoughts/ideas — begins to overwhelm any single voice, any single unit of information being conveyed.

Sometimes the internet feels like that to me. Especially when it comes to social media, and particularly when it comes to Twitter: whether people are directing their words toward me or not, there are just too many voices for me to process.

And when that happens, I lose my own voice.

I lose my voice because I have to pull back. Otherwise I get lost in the forest of other people’s words, and that makes me lose track of what’s important in my life. Sometimes I really want to reach out, but I can’t figure out what to say. I don’t always want extensive interaction, or help solving a problem — I just want some connection. But then I pause, because I don’t want all the voices focused on me, even though I dread being ignored as well.

So all of this is to say that I have been pulled back lately. Right now I am starting to reconnect with Twitter after nearly a week off, but I am still not feeling ready to share very much. I am woefully behind on reading all of the wonderful blogs I follow, too, and the thought of trying to catch up is daunting. I will be visiting family this weekend, which has its own trials, and we’ll see how “peopled out” I feel after that.

I do want to say, though, that generally things have been going well. 🙂 In fact, that’s probably part of why I’ve needed to pull back from online interaction — there has been a lot going on, and my focus has been pulled into new projects and areas of study. But I’d like to find a balance that allows me to maintain the connections I’ve made in the online world while also not getting overwhelmed by the flood of voices.

Finding My Voice

Sometimes language eludes me.

It’s not usually the ability to speak that is a problem. I sometimes speak quite a lot. Writing is admittedly easier, and things like email are usually the best way to convey my thoughts and/or plans. But the ability to put together complex themes into a coherent whole — such as an essay, a story, or a blog post — seems to get blocked sometimes.

This has been happening more and more lately, and I find it distressing. I have self-published two novels and several short stories, and for a while there I intended to make writing at least a part-time career. But I have been finding it harder and harder both to start new projects and to maintain enough momentum to finish them.

Maybe it’s an executive function issue. I’m still learning how to identify those as they come up. Mostly I just end up feeling overwhelmed, and my head goes fuzzy instead of…whatever un-fuzzy thing it was supposed to be doing.

As a current case in point, there is this blog. I have always had difficulty keeping blogs going, despite many attempts. With this one, I promised myself I would impose no deadlines, no expectations on my own ability to produce words. But I did promise a follow-up to my last post, about telling my parents that I am Autistic, so this time it’s been weighing on me that it’s taking me so long to put something together.

The talk with my parents went remarkably well. I brought all my plans, my script and my articles…and then I didn’t use any of them. Instead I just launched into the topic shortly after arriving, and didn’t stop until I felt I had said enough to reach some initial level of understanding. They asked some questions, and made some observations that helped them put what I was saying into context, and while they seemed surprised at first I could sort of see it settling in.

That conversation was also meant to be a prelude to discussing the topic with my wider social networks of family and friends, primarily via Facebook. So after I got home, I spent the rest of the week crafting that initial announcement and choosing what information I wanted to share.

I posted it on Friday morning, then went for a walk. The rest of that day was nerve-wracking, as I waited for reactions and got very few. Even things I posted after that got very little reaction for a while, which is unusual. Chatting with other Autistic people on Twitter helped me keep things in perspective for a while, particularly with the suggestion that many people probably just didn’t know what to say, but I spent the better part of two days second-guessing everything I had said and generally feeling anxious about having said anything at all.

Then over the weekend I got a private message from a friend. This is someone I have known for a few years online but have never actually met, and we had had a private conversation a couple of weeks earlier about the autism spectrum and late diagnosis. She realized at that point that she was probably on the spectrum as well, and began pursuing more information. She was writing this time to thank me for my public post, and to tell me that that previous conversation had helped in ways she hadn’t foreseen at the time.

And that is exactly why I wanted to start talking about this. In the weeks since that initial post, however, I’ve been finding myself at a loss for what to say next. My family in particular has a tendency to just not talk about uncomfortable subjects, and I still don’t have much of a sense of how they feel about this whole revelation. In addition, I get very anxious about extended conversations on social media; I find a lot of people are more interested in exchanging sound bites rather than thoughtful comments. Conflict is always difficult for me, and I am even more reluctant to risk conflict centered on the matter of my still-new identity as Autistic, which feels increasingly important to me and is also frequently misunderstood.

So I am still wrestling with language as I consider how else to be my authentically Autistic self in various facets of my life. But for now, I have managed to pull together this blog post, and I will consider that a decent next step. 🙂