21 June 2008

Innocently Stereotypical

This is from a comment I wrote to an article located at:

THIS SITE


Hello. I am autistic and have done many of these things in this article. However, it's a mistake to claim that most of us are danger to self and others - while that certainly can be the case, and I have been self-injurious, it should be made clear that every autistic person's needs and abilities vary wildly, both between individuals, within themselves (such as good spatial but poor verbal skills), and across time (the gain and loss of skills of an individual over time). 


I do understand the difficulties parents can have, though I think it would be naive of anyone who is becoming a parent to think they're going to have much opportunity for a date until their children are grown. The few times my parents have gone on dates were when we visit our aunt and uncle so they stayed with us while they went on a date. My older (non-autistic) sister had a slew of problems with babysitters, including problems by her misbehaving and also problems of babysitters causing physical and mental harm to her. Even before that, though, my parents have said that before they ever had kids that they didn't expect to have much opportunity to go on dates. 


Also, while I quite understand the difficulties that non-autistic people can have with communicating with autistic people, particularly when unable to speak or type (whether for portions of the time or all or most of the time), I think it would be a mistake to perpetuate the idea that we are non-communicative. Many autistic people have had to learn how to "read" the body language of non-autistic people, and to communicate in ways that are really foreign to our minds (for many of us, communicating words is one of these ways). 


So while I don't fault people for not understanding us, I think it is dangerous to assume we are impossible to understand. Some of my best friends are not autistic, and when I can't speak, or aam having meltdowns, then they have developed the ability to read my body language and understand even when I can't speak, or even in those times when I am unable to type as well. 


These are mostly people who haven't worked with or been around other autistic people, but they haven't tried to understand me in the context of a label, but rather in the context of myself and the situation. 


Usually it's those who are specifically trained to deal with autistic people who have, in my experience been most prone to misunderstand me, and it is typically because they look at my behavior in lenses of deficits and dysfunction, rather than taking on a more global type analysis of the situation - such as by looking at trying to stop me from rocking or spinning, rather than looking at what the stims might mean, and what is going on in the environment. 


So while I don't expect people to suddenly be able to read autistic body language (it usually takes years and years - I mean, it takes many of us years and years to understand non-autistic body language and other nonverbal cues, to state that we are inherently incomprehensible discourages people from trying to communicate with or understand us, sometimes even when we can type or talk this happens. 


Also just feel like pointing out that for things like rocking, spinning, tapping, finger flicking, and other stims, there are many reasons for this - sometimes it's because of stress/anxiety, sometimes it's something we'll do as a neutral state, sometimes it's something we do when happy/excited, sometimes when sad, sometimes when angry, etc. It's more like an unusual expression of the usual emotions, though what has been written that it can be a soothing response to chaotic stimuli, is quite accurate, though in reality it is only a small part of the picture. 


Also, another thing to keep in mind is that the characterization of autism as especially and inherently mysterious is more of along the lines of the statment that we're impossible or nearly impossible to understand - it basically says we're mysterious because we're different and mysterious, rather than we're mysterious because we're different and society doesn't provide a good framework for understanding us more. 


Again, I don't fault non-autistic people for not understanding what goes on in an autistic person, but the image can morph into a damaging stereotype in reader's minds without ever this being the intention on either part, so while what goes on in individual people is of course highly individual, regardless of neurotype, it is somewhat disquieting the frequency with which autistic people particularly get characterized in this way, when people with other speech disorders and people with other disabilities that can make communication difficult, often are not characterized this way, whereas for describing autism in journalistic articles it seems almost standard. 


I think the main things that are important to address regarding autism are the difficulties of obtaining an appropriate (let alone good) education despite IDEA (there are so many legal hoops, and often poorer people such as myself find services impossible to obtain even up to age 18 where I am, mainly due to the functioning-label stereotypes. 


That's another good thing to address, the functioning labels. Usually characterized as high-functioning (HFA) or low-functioning (LFA), Aspergers or Autistic (though really it's all autism). I was diagnosed with the Asperger label at age 10 through the school, mainly because my parents couldn't remember a language delay, and because I could write well. Okay, so since it's all autism, shouldn't I be evaluated for services based on individual needs? That's what I think, but bureaucracy thinks different. 


Mainly why I was diagnosed so late is because not only are we poor (so couldn't even begin to think about seeking out a consultation or evaluation or anything), but also my dad is on the autistic spectrum as well, so when people noticed odd thngs about me, like how I wouldn't respond to my name and would rock and line things up etc. ad nauseum, he'd reply he was "exactly the same way" at my age, and though i have apparently noticed I started speaking late (after doing Internet research indicating a movie relase date - too long a story to get into how that's relevant), it wasn't a concern, as my parents don't believe in there being a strict or ideal "shedule" of development (I don't either). 


However, when attempting years later at age 16, 17, 18, the difficulties I'd had with things like language and self-care all my life, to type these things to people who work in special services, they would nod and disregard me as just a "bright, but shy" Asperger teenager with little difficulty getting through life. Their stereotypes were far stronger than what I was actually learning to communicate these things in words. 


When one already has difficulty using words to explain complex processes and ideas, and they start initiating this communication, it is certainly no encouragement to have your words entirely disregarded on the basis of a label rather than on the basis of need, and they didn't start conducting further evaluations until the last three weeks of school before I graduated (which I nearly didn't, but somehow managed to bring my failing GPA up to 3.3). 


Because I had a "high-functioning Asperger" label based on my parents not remembering a significant language delay and because I could write well, they didn't take into account significant difficulty with things like initiating speech, auditory processing, sensory overload, self-care, multi-tasking, changing scheduled activities, learning and conducting multi-step tasks, asking for help, etc. and even refused to see these difficulties based on just things like stereotypes and budget. 


These I think are the most important types of awareness and journalism, in addition to positive yet realistic looks at how autistic people can be (such as, I wouldn't consider an article focusing exclusively on how some of us have savant abilities, and that this is the reason why autistic people are valuable as is). 


While some when I say without hint of shame or awkwardness that I am autistic, that I shouldn't "label myself" as if saying I am autistic is somehow an insult on myself, much as the word "gay" is often used as an insult, then I think - why is that not okay, when it's considered standard fare for this high-functioning/low-functioning dichotomy to be applied to me without my consent? When they say I'm low-functioning, they're wrong. When they say I'm high-functioning, they're wrong then too. My functioning depends on many things, including environment, accommodations, opportunities, the particular skill that my functioning is said to be based on, and also how I am treated and portrayed by others. 


While this may seem a tangent, it is incredibly important for the observer to be aware of how others might characterize them, and how a reader might unconsciously make decisions about what sort of person the observer is based on pre-conceived notions that they may not even be aware of. As someone of a group whose voices are often dismissed easily by such haphazardly applied pre-conceptions, it is virtually unavoidable for me to participate in such discourse and NOT be aware of them. 


For an excellent look at autism from the perspective of a significantly disabled autistic person as well as how the society perceives us, I suggest you look up the blog ballastexistenz. It's that blog, among some others, that have helped me to be able to describe my perceptions and experiences, some of which have been related here, using the words of the language. It is a useful resource indeed, and she is very good at explaining things she writes.

6 comments:

Catana said...

Excellent comment. It inspired me to read the article and add a comment of my own.

abfh said...

Good job responding to that ignorant writer. I hope your message sinks in.

Neil said...

I'm going to have to read that artice, but first I want to thank you for teaching me something about onw of my sons. He will often have a hard time deciding which cereal he wants for breakfast, and I get frustrated when he won't make up his *&^ mind.

Today I realize, from what you've written, that he's not just sitting there refusing to speak; he cannot speak. I will demand more patience of myself from now on.

I should explain: my son is now 11 years old, and finishing grade 6. In grade 1, the teacher wanted him tested for Asperger's, but due to an argument between the health system and the school system about who should test him, the test never happened. Every time I read something about autism, or especially Asperger's, it sounds just like Son.

I will talk again with my wife, but I suspect she's not interested in the testing for Asperger's. Meanwhile, I will try not to overload his brain with demands for an answer to the simple questions.

Thanks again!
Neil

geosaru said...

neil:

I'm glad that I have helped with something! Pretty early on, when it came to deciding things about what I want on my sandwich or such things, I ended up just nodding and saying yes please, or repeating what he'd said, and not really understanding. Thankfully I'm not very picky (though I've gone through times of absolutely refusing pickles, pepper, mustard, milk, anything green, anything that's not green, and stuffing at Thanksgiving).

Also, I usually need someone to go through everything we have until they say or show me the thing I want. This is usually because it's easier for me to respond to something than to just out of the blue come up with a word and then speak it, and also because I often have the option of pointing, and I also have trouble remembering what's in the house, or visually distinguishing between different things in the fridge or stacked on shelves.

Ever since I was about 5 I decided that when I was older I would make an inventory of everything in the house, with a specific inventory for food, and have it on a clipboard next to the fridge.

Even if he doesn't get formally evaluated, it would probably be a good idea to talk to him about it, some of the characteristics, at least by the teenage years. I've heard about people who are adults who went their whole lives without a diagnosis, because they were able to get through school and stuff, but later on encountered difficulties and didn't understand the context of them because nobody in the diagnosing profession thought autism could apply to someone who went through school and got a job or had a relationship.

While many of us gain more skills with increasingly less difficulty in things like jobs and relationships, a significant proportion experience increased difficulty, which can be due to a lot of things, like a lot of stressful events occurring, or increased demands from others in what they're expected to be able to do, or lots of other reasons. Also, even if it doesn't become disabling, it can help to bolster self-esteem and identity to be able to identify with other autistic people.

Of course, not everyone embraces it like this, and usually not at such a young age (I was diagnosed when 10, and my dad told me I had a different neurological wiring and some of the traits, and I basically accepted it then shrugged it off like it was completely inconsequential, then three years later I swung back and forth from accepting it to thinking I couldn't possibly be autistic, in part due to misconceptions like we lack empathy or don't want friendships or are all geniuses or none of us are. Nowadays, I accept myself as is, and am very glad my parents told me. If you have talked to him about it, or decide to in the future, and he initially doesn't believe it or doesn't seem to care, or is uncomfortable talking about it, that doesn't mean it's a wrong thing to talk about it. I experienced all of those things in the years following being told.)

Casdok said...

Yes excellent comment.

Stereotypes and budget - these are huge hurdles, and difficult ones to get round sometimes.

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