Tag Archives: labels

How functional am I?

I’m told I’m high functioning.

As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.

Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”

But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.

A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.

Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.

This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.

Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.

I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.

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Words matter to me

I want to talk a little about why I like labels so much. I mean, I’ve talked a lot about labels and their usefulness and whatnot, and I have my arguments for why labels are more helpful than harmful, but that’s not quite what I want to talk about today. This time, I want to be more personal. I want to talk about why I like them *for me.*

When I explore things like “am I aromantic?” I get people telling me that the words aren’t important and I should just live my life. I find that incredibly frustrating, because it is completely invalidating to how I process and deal with things. It actually seems a bit ironic because I usually get that kind of feedback from people who think in words, while I, the person who largely thinks in concepts and sensations, wants the words for labels and identities.

I’m not sure why it’s working that way. I would have thought that word-thinkers would be all about their words, since they use them to think, and my less-wordy self would be less interested in words. But it just doesn’t seem to work that way. I may not do my primary thinking in words, but I still LOVE WORDS SO MUCH. Maybe the fact that I often need to actively translate my thoughts into words to be able to communicate them to other people leads to me appreciating words to a rather extreme degree.

What I really want to say, though, is that having words for things helps me understand them. Being able to grab onto a word let’s me put down a signpost, so I can anchor my rather abstract thoughts into something concrete. I’m not always very good at bringing things together into coherent wholes, and words help me do that.

Ok, here’s an obvious example – “Aspergers.” Before I had that word, I was still myself. I was being who I was for my whole life – who else would I be? But there was a lot about myself that I did not understand, and my behaviors and challenges and difficulties I had often felt random and spread out and incoherent. Gaining a word let me take what was very chaotic for me and find an order and coherence to understanding what was going on. That was REALLY helpful.

This is what words and labels do for me. They don’t confine me, they help me understand what otherwise is often confusing.

To draw another analogy – I once heard that autistic people often do not see wholes very well or easily. We see pieces – all the pieces – and it can take a lot of work to bring those pieces into a whole that we can make sense out of. This is true for me, at least a little bit. How about some more examples? One obvious one, that I’ve written about before, is faces. I see faces in pieces rather than wholes. I am actually not capable of seeing a face as a whole, which can be problematic at times. As another example – ok, story time. I was visiting a friend’s house and she was showing me around. She brought me into one room without announcing what it was first. For a good 30 seconds, I looked around only seeing details – “dresser, dresser, shelf, door, bed, another door” until suddenly it clicked – “BEDROOM!” I had the word for the room, and suddenly all those details and bits and pieces came together into a coherent whole.

So for me, words matter. It’s the opposite of helpful when people try to tell me to not worry about the words, because if I am pursuing finding the right words for something, you can believe that there is a reason for it. Usually that I need to find a way to bring coherence to a number of disparate things that are difficult for me to manage until viewed as a whole.

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Labels (pictures)

Nee got a label maker. It’s lots of fun. It also means I get to take pictures like this one:

<image is of me with a label that says “autistic” across my forehead>

I can label myself if I want to! No one gets to tell me that I can’t.

People like to say things about how we shouldn’t define ourselves with labels or labels are boxes or whatever else, but usually they only mean some labels. The labels they have decided are bad. I have lots of labels. No one but me gets to dictate which ones stay and which ones don’t.

<image is of me, this time with many labels scattered across my face>

There’s nothing wrong with labels. Only with trying to tell me that some labels are bad and I should get rid of them.

Also, now my face feels funny.

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This or That

So over on the Asperger’s Support Network page on facebook, someone asked a question:

How do you determine what behavior is due to Aspergers and what is not?

Turns out I wanted to answer this question in a blog post, as a comment on a facebook post just wasn’t good enough for me. Actually, the way I first read this question was “what behaviors are due to Aspergers?”

My answer to that one is “all of them and none of them.”

This question worries me. They are always presented without context, unless the anonymous asker included context in their question – which they usually don’t. This one, of course, also did not. So I don’t know who asked or why they want to know or if there is any particular behavior they are worried about. If there is, obviously I am not sufficiently informed to answer.

However, as to behaviors in general… well, here’s the thing. Autism is pervasive. I can’t really put my different behaviors into neat little piles and say “these are the autism behaviors” any more than I can have “female behaviors.” My behaviors are simply my behaviors. Asperger’s syndrome affects everything I do, all the time.

What I really want to say to questions like this is – don’t. What is the purpose of saying “this behavior is due to Aspergers?” What are you hoping to accomplish? Ultimately, I cannot imagine a good reason to do this, and I can think a whole lot of reasons not to.

Before I go rambling away more, I just want to make my point really clear – never, ever, write off a behavior as simply “part of autism.” Never.

I imagine this topic has been coming up a lot since that article about Peter Lanza (Adam Lanza’s father) came out. The writer spent quite some time interviewing Peter Lanza, and wrote a lengthy, rather sad, article about his perspective. There was one bit that is particularly relevant here:

Peter and Nancy were confident enough in the Asperger’s diagnosis that they didn’t look for other explanations for Adam’s behavior. In that sense, Asperger’s may have distracted them from whatever else was amiss.

As I’ve said really quite often by now, I am a fan of labels. Having words empowers me, gives me direction and coherence that I might otherwise lack. The word “Asperger’s” drastically improved my life. Knowing what’s going on, being able to have a handle on it, having a WORD, that was amazing to me. IS amazing to me. Yet sometimes people respond to labels in troubling ways. Ways that show a lack of insight, of this “theory of mind” thing that allistic people like to criticize us about so much.

Sometimes, some people will see a label and just stop there. An anomalous behavior will be attributed to the label, they will simply say “well, people with [label] just do that sometimes.” and not look further. It’s why Landon Bryce of Thautcast fears “wandering” becoming a diagnosis. Because yes, sometimes autistic children wander, but it’s important to look at why. It’s important to not just write it off as something autistic children do. Sometimes the wandering is, in fact, a matter of self-protection. Of getting away from painful circumstances, whether those circumstances consist of a painful noise, or sensory overload, or gay reparative therapy, or abuse. If we get to the label and stop there, we can’t find out if there’s more there.

A diary of a mom wrote about the same issue. About a child who banged his head in a desperate attempt to cope with constant pain, and no one looked into it because “autistic children do that.”

If a child withdraws, you can’t say “that’s just autism.”

If a child is hurting themself, you can’t say “that’s just autism.”

If a child wanders off, you can’t say “that’s just autism.”

It is SO IMPORTANT to look at why. And yeah, maybe sometimes there won’t be much of a why. I regularly get distracted by shiny things, to the point that Nee tries to keep me in sight when we’re out and about, because he’s never sure when I’ll suddenly feel an intense need to study some random thing. Yeah, it happens. But it also happens that sometimes people need to get away from something that hurts them. Sometimes an autistic child may not be able to say “that hurts!” in any way other than getting away from it. I am quite sure the same is true for some autistic adults. We don’t always have words, and when we do we can’t always use them in the way people think we should.

NEVER stop at the label. NEVER say “that’s just Asperger’s.”

Oh, and please don’t try to split me apart into “asperger’s parts” and “non-asperger’s parts.” Asperger’s is throughout me. I may not be a coherent whole, but it isn’t Asperger’s that divides me.

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Are vs Have – results!

Incoming results  from my Are vs. Have poll seemed to pretty much stop once I hit 128, so at that point I started sorting through them to see if I found anything interesting. Well – I did! At least, it’s interesting to me. Hopefully you’ll find it interesting too. ^_^

A note on categories

When I was sorting through them, I just tried to categorize them as best I could. The types of answers were, in some cases, very different, so the categories will be different too. There was some fuzziness between some of the categories, and sometimes it was a bit of a toss-up whether any given thing would be best in this category or that category. Nonetheless, I did my best to put them all in an order that made sense to me. I’m just intending to share some numbers – just understand that some of them could be shuffled around a wee bit.

Ok! Numbers! Take a look:

When asked to name what we are, the types of results were as follows:

Things we do: 41
Gender: 11
Nationality/ethnicity: 11
Physical trait: 22
Relationships: 17
Things we like: 6
Personality: 35
Neurology: 12
Couldn’t figure out how to categorize: 3

When asked to name what we have, this is what I found:

Physical trait: 46
Health matters: 12
Objects: 9
Skills/Achievements: 25
Relationships: 13
Neurology: 15
Likes/wants: 7
Personality: 9
Couldn’t figure out how to categorize: 5
Didn’t fit within the context of a thing one has: 2
And finally, one assertion from someone who apparently does not describe themself that way.

And now I blather

So to state the obvious – we clearly define ourselves, overwhelmingly, by what we do, and various personality characteristics. Physical traits trailed behind in third.

Of the 17 responses based on relationships with others, 8 of them were some variant of “mom.” Nearly half!

At first I had tried to have separate categories for jobs and hobbies, but that proved untenable. With no context for the answers, there were many that I could not figure out where exactly they should go, and probably would have needed to create yet another category, even fuzzier than jobs and hobbies, that I would call “things we care about” or something. In the end, “things we do” proved to be an excellent, and interesting, category. Whether it’s a hobby or a job or activism or nervous habits or whatever, what we do is, apparently, who we are.

As for the haves, physical traits definitely dominated the field here. It seems that, by and large, our bodies are things that we have, far more than things that we are.

Answers related to health were entirely matters of illness or health issues in general. Not a single person put “good health” or anything of the like. Similarly, there were a number of answers that I categorized as neurology in both the ares and the haves, but not a single one was “neurotypical” or anything related. Which tells me that as much as we may be trying to get away from the word “normal,” the concept of normalcy seems to be very much around.

Interestingly, many of the neurology results were similar between the two. Depression, anxiety, and the autism spectrum all featured highly, but we seem to be split in terms of whether they are something we have or something we are.

There were some similarities between some of the skills and achievements in the haves, and some of the things we do in the ares. There were several answers of “job” in terms of what we have, but actual job titles were always things we are. So for instance, a person may have a job, but they are an engineer.

Not one single person put gender as a thing they have. The same goes for nationality or ethnicity. While they were both in the minority of responses of ares, they were only ares.

There is, of course, some bias in these results. Some from where I got my responses (almost all of my responses were either from people related to the autism community in some way, and people from Ravelry who were kind enough to let me impose on them), some from my own interpretations of the results, and there is probably a factor of ease of language in terms of how we self-describe. Even with all that, though, I found the sorts of answers given really quite fascinating.

I am currently still undecided about publishing the results, as I worry someone will be offended if I do. I can promise that even published, all answers will remain entirely anonymous. Even I have no way of tracking who answered what, in any way.

So I put it to you: what do you think of the results I got?

Would anyone like to see the answers themselves, and maybe even take a crack at doing your own sorting?

Or, conversely, would anyone strongly prefer that I not publish the results?

In the end, 128 responses is a small sample size, but for this blog it isn’t bad. Maybe someday when I’m famous (heh) I could do this again and see what the population at large has to say about themselves. (of course, in the meantime the poll is still open, so you can go put your answer in if you want)

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Functioning

This is a particular label point that I am still working out. I know there are many people out there who dislike the high/low functioning labels, but I’m not sure if I agree with them or not. I do, however, seem to be gradually leaning in that direction.

At first my opinion of the labels was much like my opinion of most labels – very useful but sometimes used badly or the wrong way, but that’s hardly the label’s fault. Buuuut then I started thinking about it more.

First of all, I wondered where else “high functioning” is applied. The primary other area I saw it being applied was alcoholism, where “high functioning alcoholic” is apparently a way of distinguishing alcoholics who are holding down a job from, basically, winos. Even in that context I saw people occasionally mentioning problems with the label, and how it might make it sound like a high functioning alcoholic doesn’t have problems or isn’t destructive when, in fact, alcoholism hurts everyone, regardless of how well-functioning any given alcoholic happens to be. As labels go, it’s not so great.

So then I got to thinking about what use the labels might actually have. I mean, that does seem to be the central point. Can I find an actual, reliable use for high/low functioning? Even more so, can I find a use that outweighs any potential problems with how the label is used?

I never got past the first question. Part of the problem is that people on the autism spectrum tend to have a rather significant amount of variance in what are usually considered “normal” skills. As such, it is not uncommon for a person to be considered “high functioning” in one place and “low functioning” in another. It simply depends on what the viewer is looking for, which causes the labels to be of questionable meaning. As Emily Willingham puts it, “A good science geek knows that function is often a matter of environment, not a constant measure.”

So what do people mean when they say that someone is high functioning? As it turns out, there is a tumblr asking that very question! How useful. Here are a few of the answers people have given:

I met someone for coffee and he said “You’re the highest-functioning out of all the high-functioning autistics I’ve met.”
All he had seen me do at that point was buy coffee.
http://whatishighfunctioning.tumblr.com/post/13803531667/can-buy-coffee

If you are considered a physically attractive and verbal adult woman, then you automatically having passing privilege (and will be seen as a liar when you say you cannot do things), and you automatically will be considered high-functioning.
http://whatishighfunctioning.tumblr.com/post/12337002312/appeal

I once had my own experience with someone saying to me, “you must be very high functioning.” I was telling them about my recent diagnosis, and they were rather surprised by it. As far as I could tell, what they meant was “oh, I wouldn’t have guessed.” I know they meant it as a compliment, but I found myself very uncomfortable with the comment anyway. The assumption seemed to be that being on the autism spectrum is automatically a bad thing, so it’s nice to temper it with “high functioning.” Though that’s just a guess on my part.

As far as I can tell, both from my own (admittedly limited) experiences and from what I’ve seen other people say on the subject, “high functioning” is mostly about passing. It’s about looking normal. I can pass for normal. All I have to do is only interact with strangers in limited and/or carefully controlled circumstances, never go to parties, and not go out in public if I’m too tired or stressed to make eye contact. In fact, to the average random stranger, I do pass for normal – maybe as a little odd, but most of them wouldn’t guess that I’m an aspie. Of course, I’m aided by the fact that most people, through no fault of their own, have a limited and stereotyped idea of what autistic people “look like.” So because people are not immediately aware of the fact that I am on the autism spectrum, because it does not jump out in anyone’s face right away, that means I am high-functioning. Unfortunately, people also wind up with a number of ideas of what “high-functioning” is supposed to mean. So when they look at me and see “high-functioning” they then assume that I can do all of the other things that they associate with the term – things I cannot necessarily actually do.

Once people get to know me, though, my differences tend to stand out more and more. I can’t always maintain my social face. Sometimes I stim A LOT. Sometimes I get confused by things most people consider obvious. Sometimes I can’t stand to be touched. People who know what Aspergers is like can, and have, guessed that I am on the spectrum. Several times people have been surprised when I failed to live up to what they think “high functioning” is supposed to mean. As such, I am not entirely convinced about this passing thing.

In any case, I went along mostly waffling about my opinion until I stumbled across an article comparing “mild” autistics to “severe” autistics. It really only qualified, at best, as a preliminary study, but the results were interesting. That being, that those who might be considered “high functioning” actually struggled just as much as those who might be considered “low functioning” as adults, in terms of work and relationships. Which, of course, highlights one of the several problems with labelling someone as high functioning – the assumption that since they are so high functioning and all that, they don’t need much in the way of help or resources. That is a dangerous way to think, that clearly needs to be called into question.

There is also the inverse problem. When people see someone and view them as “low functioning” they often assume that the person must not be intelligent or have skills or have anything to contribute or say. Amy Sequenzia definitely has something to say about that harmful assumption.

So overall the label does, unquestioningly, have severe problems. Problems that seem to go beyond simple mis-use, and well into the realm of inherent, unavoidable issues.

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more on labels and identity

So apparently some people out there think that everyone on the autism spectrum should call themselves “autistic” and that words like “aspergers” are harmful and should go away.  I’m still undecided on the whole “autistic” thing, but I do know that I don’t think the arguments for it are good ones.

There are some Aspie supremacists out there.  I’ve run into one of them on the internet.  Once.  And by the time I ran into that person, he was already re-thinking his stance.  Of course, it’s still possible that there are hoards of them out there and I just haven’t run into them yet.  In any case, one of the arguments against the word “aspergers” is that anyone who uses it is, deliberately or not, aligning themselves with these people and reinforcing their point of view.  I don’t buy it.  There are a small number of extremist feminists out there too – the ones who really are the “man-hating female supremacist” stereotype that gets bandied about.  I do not, however, think that everyone who uses the word “feminist” is trying to align themselves with the extremists, nor do I think the the extremists gain power by all the reasonable people who use the word.  In the same way, I don’t think it applies to aspergers either.

I’m just going to quote another point: “They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

I’ll be honest.  I have absolutely no idea what this point is trying to say, and as such, I really can’t refute it.  I am simply too confused to be able to do so.  I do, however, know that I tend to feel alienated when someone tries to tell me how I should identify.

One of the big arguments refers to the DSM-IV (which means the argument may be moot by now, but anyway): “The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have “no clinically significant general delay in language.”1 There is no other difference in diagnostic criteria”

This is something I’ve heard a lot of.  A WHOLE bleeding lot of.  I finally decided to look it up for myself, and I discovered that there are, in fact, differences beyond the language thing.  The first section, “social interaction” of Autistic Disorder is exactly the same as the first section of Asperger’s Disorder.  Identical.  However, immediately after that autism has a whole section regarding “qualitative impairments in communication” that asperger’s lacks.  It has the oft-cited optional delay or lack of spoken language, but also includes impairments in the ability to initiate or sustain a conversation, stereotyped and repetitive use of language, and a lack of spontaneous make-believe play.  None of those things are in the Asperger’s criteria.

Then there is another section, “restricted repetitive and sterotyped patterns of behavior,” that is once again the same in both criteria.

However, beyond that there are two more differences between the criteria.  Autism requires that there is some sort of delay in functioning with an onset prior to three years of age.  That alone means I likely could not be diagnosed with autism under the DSM-IV.  As far as I know, my social challenges really started to show up in kindergarten, which is definitely too old for autism.

Additionally, along with language delay being contra-indicated in Asperger’s, there must also be no clinically significant delay in the development of self-help skills, adaptive behavior, and curiosity about the environment.  So a person that had significant delays in learning to use the toilet or dress themselves would not be able to get a diagnosis of Asperger’s.

I will grant that the differences are few.  I will grant that the line can be blurry.  Nonetheless, it is simply not true to state that language delay is the only difference between the two diagnoses.

Getting back to calling it all autism, one thing I have wondered about is how those who are diagnosed with autism feel on the matter.  It has been surprisingly challenging for me to find much of anything on the topic, but I did eventually find this:

“I have a classic autism. I was nonverbal when I was young, but learned to verbalize. I do not have Asperger’s Syndrome.”

So I can say that there is at least one autistic person out there who is likely not in favor of everyone on the autism spectrum calling themselves “autistic.”

Finally, I really can’t be in favor of telling other people what to call themselves or how to identify, especially given how murky this area is.  Much as it’s uncool when a neurotypical barrels in and tells a bunch of aspies and autistics that we should really call ourselves “persons with aspergers/autism” (I plan to write more on that in the future), it’s also uncool to tell me that I don’t get to call myself an Aspie, even though I’m diagnosed with Asperger’s and that’s the word that fits me best.

That said, I am increasingly wondering how the new criteria for the DSM-V is going to impact this particular social debate.  I also really wish I could find out more about how people with “classic autism” feel or think on the matter.  As it is, I think I’m going to continue to call myself an Aspie for the time being.

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labels

I’ve decided to just go ahead and be opinionated today.

I like labels.  I like them a lot.  Now, I’m probably biased since I really like words in general – words are such amazing fantastic things, with meanings and layers of meaning and nuance and connotations and all sorts of things.  Words are cool.  There are all sorts of types of words, and most of those types are fabulous, including labels.

I have found that there are many people out there who dislike labels.  The usual reasons given are that labels pigeonhole people, or put people in boxes, or define people and therefor limit them.  Personally, I very strongly disagree with all of that.  Ok, I agree that those are bad things to do, but I disagree that labels do that.  People do that and use labels as an excuse, but in my experience people don’t really need labels to do it.  There are all sorts of excuses; labels are just one of many.

Personally, I find labels incredibly useful.  Using a label to define a person is a stupid way to use it.  Using a label to describe a person, on the other hand, is very useful indeed.  It’s helpful to me personally to have labels for myself – like, for instance, Asperger’s.  My life has gotten so incredibly much better since I got that label!  It has helped me to understand myself better – to give myself a context that helps to explain my oddities.  It doesn’t define me or pigeonhole me or limit me.  Instead, it describes me.

Interestingly, as much as some people claim to be against labels, they only seem to be against some labels.  For instance, I have yet to have anyone complain to me about labels when I describe myself as a crafter.  Or as a cat person.  Or as a woman.  Or as a rider.  Or as any number of words I use to describe myself.  I have never managed to figure out what it is that is suppose to make some labels bad, and other labels not bad.  So instead I just don’t worry about it – labels are good.  Sometimes people use them in bad ways.  That is not the fault of the label, it is the fault of the person who used it.

In other news, TACA has yet to get back to me, nor have they corrected their erroneous “fact.”  Given that it’s been almost a week, I do not consider this a good sign.

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