The orthodoxy among most of the autism bloggers I tend to read (mostly via lurking the Hub), especially those who identify as autistic themselves, is that people do not stop being autistic when they grow up; they just develop and adapt to their strengths and weaknesses like anyone else does.
This subject is interesting to me, because my boyfriend could probably be considered a "former" autistic, depending on how you define autistic. If it requires diagnosis or diagnosability by a medical professional, then technically speaking my self-diagnosed boyfriend is in all probability a "former" autistic. After all, he did fail to get an official diagnosis from a professional, who told him that he didn't seem like that professional's Asperger patients.
However, despite the degree to which he has obvious autistic traits or the ability to hide them, his history of autistic traits is a huge part of his past, and his past is a huge part of who he is now, especially given his long-standing (but lessening in the last few years) tendency to fixate on it and long for the authoritative certainty, freedom from responsibility, and special interests he enjoyed in childhood. Had he not grown up with autistic traits, he wouldn't be the person he is now. His comfortably-paying career grew out of his childhood passionate interests; his limited palate grew out of his childhood sensory sensitivities; his charming naivete grew out of his past and continuing difficulty catching onto the political games neurotypical people play; and his past and continued persistence at problem-solving and ability to easily think in text made him something of a wizard at pinball, board games, puzzles, and some video games requiring exquisite concentration.
The combination of past and present autistic traits also affects important day-to-day interactions - for instance, he has trouble understanding dark or cynical humor, seeing it as a sign of the person being upset and feeling a need to fix the upset in case it is or will become directed at him, when in fact the other person (usually me) is effectively using the dark humor to handle any negative emotions and doesn't really need anything to be fixed.
So, regardless of whether a person with spectrum traits fits the criteria to be formally diagnosed with a spectrum condition or not, autism is still very much a part of who these people are. So in that sense, autism is for life even if the outward symptoms are not, and well-adjusted and possibly subclinical adults referring to themselves as autistic or aspie are not entirely off-base in doing so. But, technically speaking, people with spectrum traits can lose or experience a great reduction in the strength of a number of those traits over time, and so would never have the "legitimacy" of official diagnosis to help cover their backs if people challenge their authenticity as people who have lived on the spectrum. (Not that that would stop the most adamant "shut this person up" voices from questioning the autistic person's authenticity or right to speak anyway.)
As for some people who seem to "outgrow" their autism while still children, it's possible that what they had was not like most of what is called autism - the kid was misdiagnosed, or had some quirk with short-lived autistic-like qualities that nobody has a name for yet.
And what if a person has a history of autism but is subclinical or nearly so as an adult, and does not want to identify as autistic? They certainly have the freedom to choose what they want to be called. Maybe they will decide later that their history of autism is important to who they are now, but there's probably no use trying to push that decision on them.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, October 16, 2007
Sunday, September 30, 2007
Regularity for Autistic People, Part 2: Stimming and Your Neurotypical
My "Regularity for Autistic People" posts are intended to explore the common ground between autistics and neurotypicals, with a light-hearted style. As explained in Part 1, the name is a spoof of the name of a blog by an autistic writer.
In Part 1, I explained how being comforted by the routine and familiar may manifest in neurotypicals.
Today, I will describe neurotypical stimming, often called fidgeting, from my inside perspective.
Neurotypical stims or fidgets can take many forms. Some of mine, past and present, include pacing (common), tapping my fingers on walls and fences as I walk down the street, thumb-twiddling (common), clicking clickable pens, gum-chewing (common), squeezing/popping zits and zit-like formations on my skin (a self-injurious and somewhat embarrassing "bad habit"), rubbing/massaging a finger, hand, or foot, twirling or tapping a pen or pencil, and fidgeting with jewelry. I think I even rock a tiny amount sometimes. Other NT stims I've seen include shifting weight back and forth while standing on a train (just saw that one tonight), pencil chewing, and nail biting.
Their purpose, it seems, is to numb out, take the edge off of life, a little like scratching an itch, except the itch is just the diffuse discomfort of living and cannot be specifically scratched. When I perform my fidgets, I either tend to be lost in my thoughts, or just kind of numbed out. Zit popping can be an exception, which often makes me feel a focused anticipation. I can also zone out and think during that though.
NT stims often start subconsciously - we just find ourselves doing them, if that. I can sometimes become aware of the impulse to perform them, though,
Their duration varies. Skin-picking, the most absorbing of them, can last upwards of 10 minutes. Others might last a few seconds, or not even get off the ground because I feel an impulse to start them but then got self-conscious of it and the impulse was too weak to make me proceed.
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. The discomfort of another person will often make a neurotypical uncomfortable, even if they are not aware of this fact. (If they are hyper-aware of this fact, they may call thesmelves "empaths.")
If you're autistic and you want your neurotypical to understand stims, maybe you can say something like, "You know how some people chew pen caps and tap their feet? It's kind of like that, but more so, and different, because of the sensory issues." Or...ask them, "How does it feel to be in a rocking chair?" I wouldn't be surprised if rocking chairs were invented by an autistic person, but they really caught on among neurotypicals, attesting to the trans-neurological appeal of stimming.
I went to an Asperger Syndrome conference this weekend, and I didn't get all that much out of it, but one thing that was mentioned was that the partners of Aspies tend to either be the most Aspie-like NTs who tend to have similar temperamental traits to Aspies (like me), or the least Aspie-like NTs who are interested in reaching out to all kinds of people (like the women my boyfriend is usually attracted to). The average NT often can't understand Aspies, and thinks that Aspies should just try harder if they want friends. Perhaps those average NTs would think that if autistic stims are a lot like normal-person fidgets, then maybe the autistic should switch to normal-person fidgets. If that happens...then maybe nothing more can be done.
It's funny...I seem to stim more than my boyfriend, who says he doesn't really seem to have any stims. He reported a couple of them when I first met him, though. Maybe the zoloft reduced the fidgets he did have, which were just about at a neurotypical level. I often like to rub his beard stubble, fidget with his fingers, and rock him back and forth. It can make you wonder who's the real Aspie in our relationship sometimes. ;) But I can read body language more consistently than he can and understand emotions as more than just binary positive or negative ("everything's fine" vs. "OMG it's a disaster") without having to think about it.
People are people, whatever quirks they have. And "lack of quirks" is a quirk in itself...how many people are normal in almost every way? Very few, I'd imagine.
In Part 1, I explained how being comforted by the routine and familiar may manifest in neurotypicals.
Today, I will describe neurotypical stimming, often called fidgeting, from my inside perspective.
Neurotypical stims or fidgets can take many forms. Some of mine, past and present, include pacing (common), tapping my fingers on walls and fences as I walk down the street, thumb-twiddling (common), clicking clickable pens, gum-chewing (common), squeezing/popping zits and zit-like formations on my skin (a self-injurious and somewhat embarrassing "bad habit"), rubbing/massaging a finger, hand, or foot, twirling or tapping a pen or pencil, and fidgeting with jewelry. I think I even rock a tiny amount sometimes. Other NT stims I've seen include shifting weight back and forth while standing on a train (just saw that one tonight), pencil chewing, and nail biting.
Their purpose, it seems, is to numb out, take the edge off of life, a little like scratching an itch, except the itch is just the diffuse discomfort of living and cannot be specifically scratched. When I perform my fidgets, I either tend to be lost in my thoughts, or just kind of numbed out. Zit popping can be an exception, which often makes me feel a focused anticipation. I can also zone out and think during that though.
NT stims often start subconsciously - we just find ourselves doing them, if that. I can sometimes become aware of the impulse to perform them, though,
Their duration varies. Skin-picking, the most absorbing of them, can last upwards of 10 minutes. Others might last a few seconds, or not even get off the ground because I feel an impulse to start them but then got self-conscious of it and the impulse was too weak to make me proceed.
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. The discomfort of another person will often make a neurotypical uncomfortable, even if they are not aware of this fact. (If they are hyper-aware of this fact, they may call thesmelves "empaths.")
If you're autistic and you want your neurotypical to understand stims, maybe you can say something like, "You know how some people chew pen caps and tap their feet? It's kind of like that, but more so, and different, because of the sensory issues." Or...ask them, "How does it feel to be in a rocking chair?" I wouldn't be surprised if rocking chairs were invented by an autistic person, but they really caught on among neurotypicals, attesting to the trans-neurological appeal of stimming.
I went to an Asperger Syndrome conference this weekend, and I didn't get all that much out of it, but one thing that was mentioned was that the partners of Aspies tend to either be the most Aspie-like NTs who tend to have similar temperamental traits to Aspies (like me), or the least Aspie-like NTs who are interested in reaching out to all kinds of people (like the women my boyfriend is usually attracted to). The average NT often can't understand Aspies, and thinks that Aspies should just try harder if they want friends. Perhaps those average NTs would think that if autistic stims are a lot like normal-person fidgets, then maybe the autistic should switch to normal-person fidgets. If that happens...then maybe nothing more can be done.
It's funny...I seem to stim more than my boyfriend, who says he doesn't really seem to have any stims. He reported a couple of them when I first met him, though. Maybe the zoloft reduced the fidgets he did have, which were just about at a neurotypical level. I often like to rub his beard stubble, fidget with his fingers, and rock him back and forth. It can make you wonder who's the real Aspie in our relationship sometimes. ;) But I can read body language more consistently than he can and understand emotions as more than just binary positive or negative ("everything's fine" vs. "OMG it's a disaster") without having to think about it.
People are people, whatever quirks they have. And "lack of quirks" is a quirk in itself...how many people are normal in almost every way? Very few, I'd imagine.
Monday, September 3, 2007
Accommodation vs. Exposure
I came across a discussion on whether a sheltered, accommodating environment leads to failures of adaptability in people with disabilities or quirks, which is quite relevant to a conversation I had with my bf this evening.
See, last night, I'd taken him to a party involving people he didn't know well acting, at times, kind of rowdy. I wasn't expecting him to feel as out of place as he did. But he felt very out of place and withdrew a lot, and was willing to put up with the situation far longer than he was comfortable with. By the time he wasn't responding to my affection anymore, I knew it was time for him to go home, and alerted the hostess.
This afternoon, he had an enjoyable conversation with someone who was on the train with us - someone from socio-economic-educational-religious background similar to his own, who wasn't wild or crazy or rowdy or anything.
And tonight, over dinner, we talked about how he seems to have trouble dealing with people who are different from the kind of people he's used to with his narrow background.
My folks have assessed him as sheltered and spoiled, and think, like one of the commentators in the link above, that his sheltered life impaired his ability to adapt to people.
But I think that my bf's sheltered background actually might have been helpful to him socially.
Why? Well...I think being exposed to a relatively narrow range of "how people behave" gave him enough consistency and stability in social situations that he could figure out at least a little of what was going on, and learn at least a little about how to get along with people that, even if not as generalizable as it could be, is still better than nothing.
Whereas if he'd been exposed to a much more heterogeneous group of people, spanning a variety of classes and subcultures and religions, he might not have even gotten an idea of where to *start* getting along with people. He might have just given up hope on even figuring any of it out.
Given that my bf thinks in terms of binary inputs and outputs, he would have needed some kind of rule that would apply most of the time in order to have any success with making friends. With a homogeneous group (basically Conservative to relatively liberal Orthodox Jews with an upper middle class, highly educated background), any social rule he came up with or learned from his parents or others would have a better chance of applying across people and situations than in a heterogeneous group. The input and output modulation for heterogeneous groups may have had to be too refined from the get-go for my bf to have a chance to figure it out.
So yes, my bf finds it hard to adapt to people for whom the rules he learned for dealing with "his own kind" don't work (and even though I'm not from the same background as him, they happen to work well enough for me in general). But he's fortunate to have been able to learn any rules for dealing with people at all, rather than having just given up on it as a hopelessly chaotic mess, and that those rules in combination with the rest of his personality actually managed to land friends over the years.
I suppose it's possible that he could have adapted rather than given up if he grew up in a less sheltered background, but I don't think it's obvious that the sheltered background in itself hurt him, and it could have been just what the doctor ordered for a person of the so-called broader autistic phenotype. Build confidence and learn basics in an environment in which there is not too much variation and chaos so as to overwhelm and confuse the autistic-type. Then expand on those basics.
Maybe it wouldn't work for building a varied palate...but even in that case, throwing too many different kinds of foods at the person too quickly still might not be wise. They might instinctively cling to the first few foods anyway. Deprivation of comfort might just promote further defensive clinging to a narrow comfort zone.
Autistic-types might not be able to avoid sensory overwhelm ALL the time, but a comfort zone they can retreat to when they need it is probably a good thing. We don't usually take away neurotypical children's blankies or shock them or deprive them of candy we just waved in front of their faces when they suck their thumbs, do we? Some degree of comfort and chaos management is probably necessary. A semi-sheltered life, with some of the hard knocks that come with any life even if it is sheltered, might not be all that bad for an autistic-type.
See, last night, I'd taken him to a party involving people he didn't know well acting, at times, kind of rowdy. I wasn't expecting him to feel as out of place as he did. But he felt very out of place and withdrew a lot, and was willing to put up with the situation far longer than he was comfortable with. By the time he wasn't responding to my affection anymore, I knew it was time for him to go home, and alerted the hostess.
This afternoon, he had an enjoyable conversation with someone who was on the train with us - someone from socio-economic-educational-religious background similar to his own, who wasn't wild or crazy or rowdy or anything.
And tonight, over dinner, we talked about how he seems to have trouble dealing with people who are different from the kind of people he's used to with his narrow background.
My folks have assessed him as sheltered and spoiled, and think, like one of the commentators in the link above, that his sheltered life impaired his ability to adapt to people.
But I think that my bf's sheltered background actually might have been helpful to him socially.
Why? Well...I think being exposed to a relatively narrow range of "how people behave" gave him enough consistency and stability in social situations that he could figure out at least a little of what was going on, and learn at least a little about how to get along with people that, even if not as generalizable as it could be, is still better than nothing.
Whereas if he'd been exposed to a much more heterogeneous group of people, spanning a variety of classes and subcultures and religions, he might not have even gotten an idea of where to *start* getting along with people. He might have just given up hope on even figuring any of it out.
Given that my bf thinks in terms of binary inputs and outputs, he would have needed some kind of rule that would apply most of the time in order to have any success with making friends. With a homogeneous group (basically Conservative to relatively liberal Orthodox Jews with an upper middle class, highly educated background), any social rule he came up with or learned from his parents or others would have a better chance of applying across people and situations than in a heterogeneous group. The input and output modulation for heterogeneous groups may have had to be too refined from the get-go for my bf to have a chance to figure it out.
So yes, my bf finds it hard to adapt to people for whom the rules he learned for dealing with "his own kind" don't work (and even though I'm not from the same background as him, they happen to work well enough for me in general). But he's fortunate to have been able to learn any rules for dealing with people at all, rather than having just given up on it as a hopelessly chaotic mess, and that those rules in combination with the rest of his personality actually managed to land friends over the years.
I suppose it's possible that he could have adapted rather than given up if he grew up in a less sheltered background, but I don't think it's obvious that the sheltered background in itself hurt him, and it could have been just what the doctor ordered for a person of the so-called broader autistic phenotype. Build confidence and learn basics in an environment in which there is not too much variation and chaos so as to overwhelm and confuse the autistic-type. Then expand on those basics.
Maybe it wouldn't work for building a varied palate...but even in that case, throwing too many different kinds of foods at the person too quickly still might not be wise. They might instinctively cling to the first few foods anyway. Deprivation of comfort might just promote further defensive clinging to a narrow comfort zone.
Autistic-types might not be able to avoid sensory overwhelm ALL the time, but a comfort zone they can retreat to when they need it is probably a good thing. We don't usually take away neurotypical children's blankies or shock them or deprive them of candy we just waved in front of their faces when they suck their thumbs, do we? Some degree of comfort and chaos management is probably necessary. A semi-sheltered life, with some of the hard knocks that come with any life even if it is sheltered, might not be all that bad for an autistic-type.
Monday, August 27, 2007
Time to Deconstruct Autism?
I think a big problem with the current social construct of autism is that it lumps too many things together. It's flawed even without the spectrum, which is one of the most popular criticisms of the current construct of autism. (Some angry "curebie" parents of LFAs often argue that full-blown LFA is the only thing that should properly be called "autism.") No two people in the same diagnostic or broader phenotype category are likely to have the exact same challenges and quirks. They do not all have the same needs. Sometimes they don't even have similar needs.
I think that children who display what are now considered "autistic behaviors" ought to be assessed individually for their sensory, cognitive, and behavioral issues, via tests, observations, and interviews with the parents to report behavior not seen in the lab (e.g. poo-smearing and head-banging). Treatment should then be done in a way that is sensible and realistic and does not violate human rights.
I wonder how many LFAs would improve their most infamous problem behaviors with sensory comforts tailored to their over- and under-sensitivities? How often has this been tried? It would probably be more humane and effective than institutionalization or potentially dangerous quack cures. It might be a bit expensive...but it might be the best hope these children have, besides the "luck of the draw" of growing up. Perhaps institutions could give way to centers for dispensing sensory tests and tools for those with what we now call autism.
If they still don't do well, it might be a good idea to further test these kids for allergies and such.
Problem is, though, we may need to hang on to the "autism spectrum" concept at least to some degree to do this. But perhaps the name could be changed to something accurate and non-degrading that does not mention the dreaded A-word. "Sensory-Cognitive Developmental Challenges" or something like that.
I think that children who display what are now considered "autistic behaviors" ought to be assessed individually for their sensory, cognitive, and behavioral issues, via tests, observations, and interviews with the parents to report behavior not seen in the lab (e.g. poo-smearing and head-banging). Treatment should then be done in a way that is sensible and realistic and does not violate human rights.
I wonder how many LFAs would improve their most infamous problem behaviors with sensory comforts tailored to their over- and under-sensitivities? How often has this been tried? It would probably be more humane and effective than institutionalization or potentially dangerous quack cures. It might be a bit expensive...but it might be the best hope these children have, besides the "luck of the draw" of growing up. Perhaps institutions could give way to centers for dispensing sensory tests and tools for those with what we now call autism.
If they still don't do well, it might be a good idea to further test these kids for allergies and such.
Problem is, though, we may need to hang on to the "autism spectrum" concept at least to some degree to do this. But perhaps the name could be changed to something accurate and non-degrading that does not mention the dreaded A-word. "Sensory-Cognitive Developmental Challenges" or something like that.
Wednesday, August 22, 2007
Outgrowing autism?
This discussion got me wondering...
How common is it for people to "outgrow" autism?
What counts as "outgrowing?"
How many people who "outgrow" it "grow back into it?"
What is it in the multi-faceted nature of autism that would allow some cases to be magically "outgrown" and others not?
If it means simply not fitting the diagnostic criteria for an ASD anymore, then it's likely that my boyfriend has "outgrown" his Asperger's for the intents and purposes of documenting recoveries or remissions. But he still has some quirks that I don't think can simply be written off as results of a strict upbringing. His sister grew up in the same household and seems to have the same functional attitudes toward social and interpersonal stuff as just about any neurotypical - for instance, the attitudes of moral flexibility and non-excessive fear of angering one or two friends that are mysteriously absent in my boyfriend. Also, she can presumably handle indirect communication from others and not dominate a conversation involving more than 2 people. (At least from my perspective, my bf doesn't seem bad at letting me talk in one-on-one conversations, although he may not let things stay quiet for long, unless I fall asleep in the car or something.)
But do any of these people truly become NT, rather than subclinical neurologically quirky folks or autistics who can pass for NT? If so, then their "autism" may have been a different beast from the kinds that people don't outgrow.
I've sometimes wondered if my bf's childhood sensory integration issues were related somehow to the epilepsy he had in adolsecence, such that he outgrew both once he outgrew the epilepsy. And, no longer having the sensory integration issues, he'd only be autistic by memory. But his attachment to his memories of his autistic younger days might be a lingering sign of autistic cognition, i.e. imprinting on his early impressions of what slimy foods and hot shower water on his head felt like and so feeling he must still avoid these things...or just the kind of thing you can expect from anyone who had a difficult time of anything in their youth, being afraid to revisit whatever it was.
People's brains rewire all the time. It's often called "learning," or in some cases involving young people, "growing up." Maybe some brains just "learn" how to integrate their senses after getting off to a slow start. I think I once read NT tots tend to go through an autistic-like phase of being stuck on detailed rituals and favorite objects. Here is a page on NT toddlers at 18 months...about the time autistic toddlers tend to stop talking and start playing with tiny parts of objects. Apparently, NT babies at this age are highly fond of stimming that would be unacceptable in older children and favorite objects. And 17 month old NTs tend to be finicky eaters kind of like many older Aspies. Hmm. So, at least in a certain age range for most people, the brain rewiring in ways that promote fewer autistic-like behaviors is something that happens naturally.
So maybe there's a kind of developmental course, probably a rare one, that allows for a kid to be diagnosably autistic at one age and then just grow out of it and leave few signs of having ever been autistic...fewer than my boyfriend, who was at the very least on the spectrum (or an "autistic cousin" with strong symptoms) until puberty.
It's all speculation at this point. Even studies can be tricky when it comes to such soft, interdependent variables as one might expect in a range of conditions with somewhat similar outward symptoms that are all lumped together under a social construct.
How common is it for people to "outgrow" autism?
What counts as "outgrowing?"
How many people who "outgrow" it "grow back into it?"
What is it in the multi-faceted nature of autism that would allow some cases to be magically "outgrown" and others not?
If it means simply not fitting the diagnostic criteria for an ASD anymore, then it's likely that my boyfriend has "outgrown" his Asperger's for the intents and purposes of documenting recoveries or remissions. But he still has some quirks that I don't think can simply be written off as results of a strict upbringing. His sister grew up in the same household and seems to have the same functional attitudes toward social and interpersonal stuff as just about any neurotypical - for instance, the attitudes of moral flexibility and non-excessive fear of angering one or two friends that are mysteriously absent in my boyfriend. Also, she can presumably handle indirect communication from others and not dominate a conversation involving more than 2 people. (At least from my perspective, my bf doesn't seem bad at letting me talk in one-on-one conversations, although he may not let things stay quiet for long, unless I fall asleep in the car or something.)
But do any of these people truly become NT, rather than subclinical neurologically quirky folks or autistics who can pass for NT? If so, then their "autism" may have been a different beast from the kinds that people don't outgrow.
I've sometimes wondered if my bf's childhood sensory integration issues were related somehow to the epilepsy he had in adolsecence, such that he outgrew both once he outgrew the epilepsy. And, no longer having the sensory integration issues, he'd only be autistic by memory. But his attachment to his memories of his autistic younger days might be a lingering sign of autistic cognition, i.e. imprinting on his early impressions of what slimy foods and hot shower water on his head felt like and so feeling he must still avoid these things...or just the kind of thing you can expect from anyone who had a difficult time of anything in their youth, being afraid to revisit whatever it was.
People's brains rewire all the time. It's often called "learning," or in some cases involving young people, "growing up." Maybe some brains just "learn" how to integrate their senses after getting off to a slow start. I think I once read NT tots tend to go through an autistic-like phase of being stuck on detailed rituals and favorite objects. Here is a page on NT toddlers at 18 months...about the time autistic toddlers tend to stop talking and start playing with tiny parts of objects. Apparently, NT babies at this age are highly fond of stimming that would be unacceptable in older children and favorite objects. And 17 month old NTs tend to be finicky eaters kind of like many older Aspies. Hmm. So, at least in a certain age range for most people, the brain rewiring in ways that promote fewer autistic-like behaviors is something that happens naturally.
So maybe there's a kind of developmental course, probably a rare one, that allows for a kid to be diagnosably autistic at one age and then just grow out of it and leave few signs of having ever been autistic...fewer than my boyfriend, who was at the very least on the spectrum (or an "autistic cousin" with strong symptoms) until puberty.
It's all speculation at this point. Even studies can be tricky when it comes to such soft, interdependent variables as one might expect in a range of conditions with somewhat similar outward symptoms that are all lumped together under a social construct.
Thursday, August 16, 2007
Treatment vs. Cure
Just read this while perusing AFF:
http://autismrealitynb.wordpress.com/?s=aspies
From what I've read of neurodiversity, they aren't against treating autism. They're all in favor of services, educations (that don't just force the kid to perform NT-ish tricks, but rather to do something meaningful), and tools to help autistics do better in the world.
What they're against is trying to eliminate all autistic traits in people altogether, especially using therapies that are not proven to be able to do so, and not even giving autistic people a chance in life.
Consider the case of treating blindness or deafness, both of which are essentially incurable. They are given educations in alternative communication methods like Braille, sign language, or lipreading; and they are given tools such as canes, service dogs, specialized computers, and text phones to help them get around the missing sense in daily life. Yes, there are hearing aids for deaf people, but they don't work perfectly.
You don't see throngs of parents trying to cure their children's blindness or deafness with a special diet (although some people do benefit from special diets) or with antidotes to poisons for which there's no proof that these poisons are the cause of blindness or deafness. You don't hear of blind children being taught in behaviorism classes to not close their eyes or move their eyes around when talking to another person, lest the other person think the blind person is being evasive. You do sometimes hear of deaf children being taught to always wear their hearing aids, lipread, and speak as best they can to mask their deafness...but a deaf person I know who was raised that way thinks it was a totally dumb idea (no pun intended). Blindness, especially, is hard to mask, and people who have it are allowed - even encouraged - to be open about it, sporting those red-and-white canes and service dogs and dark sunglasses, so that people can accommodate their disabilities.
Why not do the same with autism? Why not just let them show their disabilities and accommodate them with the proper tools? Why try to train them like dogs to make eye contact like a normal person? Why lob onto the most ridiculous theories for why they ended up autistic, and use the most ridiculous quack cures to try to undo their autism?
Perhaps because of the cognitive difficulties of autism, and how they're hyped up by the media. A blind or deaf person is presumed to be able to think and feel like the rest of us. They can generally also take care of themselves physically, missing senses aside - go to the bathroom and so on. But an autistic, especially a low-functioning autistic with many disabilities and sensory processing issues, is presumed oftentimes to not be a sentient being. And even high-functioning autistics can be labeled monsters.
I hope the neurodiversity movement will eventually become believable and visible enough that the general public will start to see and treat autistics as human beings, much as is done with blind people.
http://autismrealitynb.wordpress.com/?s=aspies
From what I've read of neurodiversity, they aren't against treating autism. They're all in favor of services, educations (that don't just force the kid to perform NT-ish tricks, but rather to do something meaningful), and tools to help autistics do better in the world.
What they're against is trying to eliminate all autistic traits in people altogether, especially using therapies that are not proven to be able to do so, and not even giving autistic people a chance in life.
Consider the case of treating blindness or deafness, both of which are essentially incurable. They are given educations in alternative communication methods like Braille, sign language, or lipreading; and they are given tools such as canes, service dogs, specialized computers, and text phones to help them get around the missing sense in daily life. Yes, there are hearing aids for deaf people, but they don't work perfectly.
You don't see throngs of parents trying to cure their children's blindness or deafness with a special diet (although some people do benefit from special diets) or with antidotes to poisons for which there's no proof that these poisons are the cause of blindness or deafness. You don't hear of blind children being taught in behaviorism classes to not close their eyes or move their eyes around when talking to another person, lest the other person think the blind person is being evasive. You do sometimes hear of deaf children being taught to always wear their hearing aids, lipread, and speak as best they can to mask their deafness...but a deaf person I know who was raised that way thinks it was a totally dumb idea (no pun intended). Blindness, especially, is hard to mask, and people who have it are allowed - even encouraged - to be open about it, sporting those red-and-white canes and service dogs and dark sunglasses, so that people can accommodate their disabilities.
Why not do the same with autism? Why not just let them show their disabilities and accommodate them with the proper tools? Why try to train them like dogs to make eye contact like a normal person? Why lob onto the most ridiculous theories for why they ended up autistic, and use the most ridiculous quack cures to try to undo their autism?
Perhaps because of the cognitive difficulties of autism, and how they're hyped up by the media. A blind or deaf person is presumed to be able to think and feel like the rest of us. They can generally also take care of themselves physically, missing senses aside - go to the bathroom and so on. But an autistic, especially a low-functioning autistic with many disabilities and sensory processing issues, is presumed oftentimes to not be a sentient being. And even high-functioning autistics can be labeled monsters.
I hope the neurodiversity movement will eventually become believable and visible enough that the general public will start to see and treat autistics as human beings, much as is done with blind people.
Wednesday, August 15, 2007
Regularity: for Autistic People. Part 1: The Normality Fixation
(The title of this entry is a rip off of the "Autism: For Regular People" blog.)
Just read this post by Axinar wondering why neurotypical people get so upset over such little things as wearing inappropriate clothing.
I think I have a good idea as to why.
All human beings, autistic and non-autistic, look to a certain degree of sameness for comfort. This is said to translate for autistics into the widely known "symptom" of a need for routine and ritual, and having an inexplicable "meltdown" if one little detail is out of place.
For neurotypicals, the only difference is what details are focused on as needing to be the same.
For an autistic person, it may be a specifically comforting texture or sight.
For non-autistics, famous for being able to screen out "irrelevant" details as in the famous case of normal people not noticing a gorilla walking onto a basketball court while they're told to pay attention to the ball, it's likely to be a context-specific social custom. Certain things - like common neurotypical stereotypies such as thumb-twiddling, nail-biting, leg-twitching, and pencil-tapping - are filtered out as irrelevant, while other things, like the clothing you wear, seem to always be relevant in a social context.
In an office, you usually dress in ways that other people in the office dress, more or less. NTs get a general sense from subconsciously obserivng others of which patterns are appropriate, inappropriate, and irrelevant. If anyone violates this sense and wears something out of line - like a red dress or an old ratty sweater - then the NTs sense of "sameness" is violated. A "relevant" detail is out of place.
The result: a meltdown. (Or, to put it in traditional NT lingo: an emotional overreaction. Why are autsitics' emotional overreactions compared to nuclear disasters, and ours not?)
The meltdown may take the form of nasty gossip about the person violating the NT's need for routine (venting), and/or trying to restore the routine by putting pressure on the violator not to violate any of the relevant details. Oftentimes, nasty gossip, and subtle changes in behavior around the person, are attempts to pressure the person to figure out what's wrong and change it. Unfortunately, the NT's blindness to "irrelevant" details, and inability most of the time to even imagine them, can lead to some grave mistakes being made, as when an autistic is exposed to extreme sensory overload by the neurotypical's attempt to force him or her to "act normal" at the cost of learning and enjoying what the autistic actually can learn and enjoy.
Now why do people need sameness at all?
Possibly because if something is out of place, our instincts tell us that the cause of that out-of-place-ness may be dangerous: a predator may have moved that blade of grass; the person wearing the strange clothes is an enemy invading our territory; those odd movements could be a sign of disease, or of the person about to do something dangerous. Sameness means that there is no evidence of such an outside threat having come by. Sameness is safe.
So...I think normality is the "classically neurotypical" version of routine and ritual, which is an expression of the basic human need for reassuring sameness, which may come from the instinctive sense that if something's out of place it's likely due to a predator or threat. Hopefully this will help confused autistic people reading this blog to understand us non-autistics and the weird things we do sometimes.
Just read this post by Axinar wondering why neurotypical people get so upset over such little things as wearing inappropriate clothing.
I think I have a good idea as to why.
All human beings, autistic and non-autistic, look to a certain degree of sameness for comfort. This is said to translate for autistics into the widely known "symptom" of a need for routine and ritual, and having an inexplicable "meltdown" if one little detail is out of place.
For neurotypicals, the only difference is what details are focused on as needing to be the same.
For an autistic person, it may be a specifically comforting texture or sight.
For non-autistics, famous for being able to screen out "irrelevant" details as in the famous case of normal people not noticing a gorilla walking onto a basketball court while they're told to pay attention to the ball, it's likely to be a context-specific social custom. Certain things - like common neurotypical stereotypies such as thumb-twiddling, nail-biting, leg-twitching, and pencil-tapping - are filtered out as irrelevant, while other things, like the clothing you wear, seem to always be relevant in a social context.
In an office, you usually dress in ways that other people in the office dress, more or less. NTs get a general sense from subconsciously obserivng others of which patterns are appropriate, inappropriate, and irrelevant. If anyone violates this sense and wears something out of line - like a red dress or an old ratty sweater - then the NTs sense of "sameness" is violated. A "relevant" detail is out of place.
The result: a meltdown. (Or, to put it in traditional NT lingo: an emotional overreaction. Why are autsitics' emotional overreactions compared to nuclear disasters, and ours not?)
The meltdown may take the form of nasty gossip about the person violating the NT's need for routine (venting), and/or trying to restore the routine by putting pressure on the violator not to violate any of the relevant details. Oftentimes, nasty gossip, and subtle changes in behavior around the person, are attempts to pressure the person to figure out what's wrong and change it. Unfortunately, the NT's blindness to "irrelevant" details, and inability most of the time to even imagine them, can lead to some grave mistakes being made, as when an autistic is exposed to extreme sensory overload by the neurotypical's attempt to force him or her to "act normal" at the cost of learning and enjoying what the autistic actually can learn and enjoy.
Now why do people need sameness at all?
Possibly because if something is out of place, our instincts tell us that the cause of that out-of-place-ness may be dangerous: a predator may have moved that blade of grass; the person wearing the strange clothes is an enemy invading our territory; those odd movements could be a sign of disease, or of the person about to do something dangerous. Sameness means that there is no evidence of such an outside threat having come by. Sameness is safe.
So...I think normality is the "classically neurotypical" version of routine and ritual, which is an expression of the basic human need for reassuring sameness, which may come from the instinctive sense that if something's out of place it's likely due to a predator or threat. Hopefully this will help confused autistic people reading this blog to understand us non-autistics and the weird things we do sometimes.
Tuesday, August 14, 2007
The Angry Wives' Club
The most prominent NT opinions on autism in general are spread by mainstream psychology and by desperate and frustrated parents who buy into the notion that autism is a dire disease that should be cured by whatever means imaginable.
In my sub-sphere, the world of NTs in romantic relationships with autists, the most prominent voice is the Angry Wife, exemplified by the average member of the infamous "AS Partners" forum. From what I gather, you pretty much have to be an angry NT wife to join and for your posts to be published: they screen newbies heavily to keep out trolling and unsupportive posting (some people have reported trying to give them a piece of their minds and getting censored), and they only allow the NTs to join. With some of the things they say, I can see why they're so infamous. Aspies as Dementors? (What if these wives themselves are the Dementors who have sucked the souls out of their Aspies, hence the extreme withdrawal and lack of emotional reciprocity they complain about?) All AS/NT marriages end in divorce? (Who doesn't fall out of love these days? And those that don't have to put some work into maintaining love.) Only they exist? (Do the husbands only exist to the wives as someone to blame?)
Angry wives aren't just on the Internet, either. Books like Aspergers In Love and An Asperger Marriage also tend to have a bit of a bad reputation among Aspies. My boyfriend has the "Aspergers in Love" book along with a few other autism-related books, but he never reads them. I flipped through "Aspergers In Love" and it didn't have much I could relate to in my relationship, with all the NTs being extreme NTs and the Aspies being extreme AS.
So where are the NTs who still love their Aspie partners, and don't believe that the stereotypical broken marriage is all that's left?
AS And Their Partners is a decent place to go. Unlike the angry wives' club with a similar name but a very different philosophy, it is open to both Aspies and NTs, is led primarily by Aspies in happy relationships with NTs, and takes a positive, egalitarian stance toward relationships in which one or both partners have Asperger's. People share adventures and tips on how to handle some of the problems that crop up. Unfortunately, the only section that's open to public view is the introduction section, where quite a few people come in introducing themselves with rants about their relationship, such that the public face of the forum tends to inadvertently promote the Angry Wife stereotype. (An Aspie online friend read some of the newbie posts, and thought AS And Their Partners was an angry wives' club and mistook it for AS Partners.)
NTs with positive attitudes can also be spotted on pro-neurodiversity AS forums that are open to NT allies, such as Aspies for Freedom and Wrong Planet. But given that these places are chiefly Aspie-oriented, the NT voices there might be a little harder to find than on AS and Partners, which caters explicitly to both Aspies and NTs.
Many of the pro-neurodiversity parents are probably also in loving AS/NT relationships, but as parents tend to do, they may talk more about their children than their marriage.
In my sub-sphere, the world of NTs in romantic relationships with autists, the most prominent voice is the Angry Wife, exemplified by the average member of the infamous "AS Partners" forum. From what I gather, you pretty much have to be an angry NT wife to join and for your posts to be published: they screen newbies heavily to keep out trolling and unsupportive posting (some people have reported trying to give them a piece of their minds and getting censored), and they only allow the NTs to join. With some of the things they say, I can see why they're so infamous. Aspies as Dementors? (What if these wives themselves are the Dementors who have sucked the souls out of their Aspies, hence the extreme withdrawal and lack of emotional reciprocity they complain about?) All AS/NT marriages end in divorce? (Who doesn't fall out of love these days? And those that don't have to put some work into maintaining love.) Only they exist? (Do the husbands only exist to the wives as someone to blame?)
Angry wives aren't just on the Internet, either. Books like Aspergers In Love and An Asperger Marriage also tend to have a bit of a bad reputation among Aspies. My boyfriend has the "Aspergers in Love" book along with a few other autism-related books, but he never reads them. I flipped through "Aspergers In Love" and it didn't have much I could relate to in my relationship, with all the NTs being extreme NTs and the Aspies being extreme AS.
So where are the NTs who still love their Aspie partners, and don't believe that the stereotypical broken marriage is all that's left?
AS And Their Partners is a decent place to go. Unlike the angry wives' club with a similar name but a very different philosophy, it is open to both Aspies and NTs, is led primarily by Aspies in happy relationships with NTs, and takes a positive, egalitarian stance toward relationships in which one or both partners have Asperger's. People share adventures and tips on how to handle some of the problems that crop up. Unfortunately, the only section that's open to public view is the introduction section, where quite a few people come in introducing themselves with rants about their relationship, such that the public face of the forum tends to inadvertently promote the Angry Wife stereotype. (An Aspie online friend read some of the newbie posts, and thought AS And Their Partners was an angry wives' club and mistook it for AS Partners.)
NTs with positive attitudes can also be spotted on pro-neurodiversity AS forums that are open to NT allies, such as Aspies for Freedom and Wrong Planet. But given that these places are chiefly Aspie-oriented, the NT voices there might be a little harder to find than on AS and Partners, which caters explicitly to both Aspies and NTs.
Many of the pro-neurodiversity parents are probably also in loving AS/NT relationships, but as parents tend to do, they may talk more about their children than their marriage.
Saturday, August 11, 2007
The Relative Invisibility of Autistic Adults
This is something of a political rant.
I found myself wondering why there seems to be much less visibility in the general culture and in official, offline-based resources for autistic-spectrum people for issues related to autistic adults and their relationships than there is for issues related to autistic children and their parents.
You hear all the time about the statistics of 1 in 150 kids being diagnosed with autism, speculation on what causes so many kids to have autism, therapies for kids with autism, and resources for parents of kids with autism. My boyfriend gets a periodical flyer/newsletter from an AS advocacy group, and most of the articles in it are geared toward children and teenagers. Most of the offline groups listed on itswebsite are geared toward children and teenagers and their parents.
I remember going with my boyfriend to a class on adolescent and adult autism-spectrum conditions for therapists and social workers looking to work with autistic-spectrum people. He was serving on a panel in that class. After the panel, the panelists were allowed to interact with people in the class, and I followed my boyfriend along to some of those small discussion groups so they could talk to both of us about the relationship. Some of the people asked us where they could find more information about adult autism, and we directed them to the online forums we knew of.
Why the invisibility of the autistic adults? Why do you have to go to somewhat obscure corners of the web that few non-autistics would hear about or seek out?
I wonder if it's because all these people who sell or buy into the popular model of autism as a disease are hoping to convince themselves and the world that, if you choose the right therapies, your kid will either grow up not to have autism anymore, or not have to rely on strategies to accommodate their autism in their adult relationships. That isn't so, for better or for worse. Quite likely for the better, IMO, because I find that trying to maintain an intimate relationship with an Aspie and understand the issues of adult autism in general has been encouraging me to question things I take for granted, and to become more compassionate, even towards myself. If it is not fair to judge autistic people as being less valuable because of the things they find difficult, how is it fair for me to judge myself as lacking value because I'm "too normal" and thus "not special?"
Some quacks and so on would want to perpetuate the notion that autism rates are indeed exploding rapidly for reasons other than the recent recognition of the broader spectrum - which would require there being many fewer autistic adults than autistic kids - so as to get people to buy into the reasoning behind their "cures," which is that some avoidable or reversible external agent such as mercury in vaccines, pollution, or allergies to increasingly genetically and chemically altered foods is causing all or almsot all autism, and therefore avoiding these agents with their special diets and treatments will cure it.
But perhaps the reasons behind the invisibility are not so dire. Perhaps it's simply a matter of autism being easier to recognize in children than in adults, since autistic adults have often taught themselves coping mechanisms or learned to communicate effectively. Or maybe it's a simple matter of people naturally wanting to invest in the children, who are the nation's future, in genral.
The idealist in me wants to see more people questioning their assumptions and treating and valuing all people as equals, regardless of their neurology. And I think greater visibility of adult autism, in theory, could help with that: it will alert us to the fact that not everyone around us thinks and feels the way we do, and some of the people we encounter in our daily lives could feel and think in ways we usually don't imagine. But the cynic in me says that as long as people don't see easy money or other shortcuts to satisfaction via learning to consider that the people in our daily lives might think and feel in ways we do not expect (and that those differences might be useful), adult autism will stay under the popular radar. Or if it does become more visible, it will be the same miracle cure quick buck angle that we see with childhood autism.
I found myself wondering why there seems to be much less visibility in the general culture and in official, offline-based resources for autistic-spectrum people for issues related to autistic adults and their relationships than there is for issues related to autistic children and their parents.
You hear all the time about the statistics of 1 in 150 kids being diagnosed with autism, speculation on what causes so many kids to have autism, therapies for kids with autism, and resources for parents of kids with autism. My boyfriend gets a periodical flyer/newsletter from an AS advocacy group, and most of the articles in it are geared toward children and teenagers. Most of the offline groups listed on itswebsite are geared toward children and teenagers and their parents.
I remember going with my boyfriend to a class on adolescent and adult autism-spectrum conditions for therapists and social workers looking to work with autistic-spectrum people. He was serving on a panel in that class. After the panel, the panelists were allowed to interact with people in the class, and I followed my boyfriend along to some of those small discussion groups so they could talk to both of us about the relationship. Some of the people asked us where they could find more information about adult autism, and we directed them to the online forums we knew of.
Why the invisibility of the autistic adults? Why do you have to go to somewhat obscure corners of the web that few non-autistics would hear about or seek out?
I wonder if it's because all these people who sell or buy into the popular model of autism as a disease are hoping to convince themselves and the world that, if you choose the right therapies, your kid will either grow up not to have autism anymore, or not have to rely on strategies to accommodate their autism in their adult relationships. That isn't so, for better or for worse. Quite likely for the better, IMO, because I find that trying to maintain an intimate relationship with an Aspie and understand the issues of adult autism in general has been encouraging me to question things I take for granted, and to become more compassionate, even towards myself. If it is not fair to judge autistic people as being less valuable because of the things they find difficult, how is it fair for me to judge myself as lacking value because I'm "too normal" and thus "not special?"
Some quacks and so on would want to perpetuate the notion that autism rates are indeed exploding rapidly for reasons other than the recent recognition of the broader spectrum - which would require there being many fewer autistic adults than autistic kids - so as to get people to buy into the reasoning behind their "cures," which is that some avoidable or reversible external agent such as mercury in vaccines, pollution, or allergies to increasingly genetically and chemically altered foods is causing all or almsot all autism, and therefore avoiding these agents with their special diets and treatments will cure it.
But perhaps the reasons behind the invisibility are not so dire. Perhaps it's simply a matter of autism being easier to recognize in children than in adults, since autistic adults have often taught themselves coping mechanisms or learned to communicate effectively. Or maybe it's a simple matter of people naturally wanting to invest in the children, who are the nation's future, in genral.
The idealist in me wants to see more people questioning their assumptions and treating and valuing all people as equals, regardless of their neurology. And I think greater visibility of adult autism, in theory, could help with that: it will alert us to the fact that not everyone around us thinks and feels the way we do, and some of the people we encounter in our daily lives could feel and think in ways we usually don't imagine. But the cynic in me says that as long as people don't see easy money or other shortcuts to satisfaction via learning to consider that the people in our daily lives might think and feel in ways we do not expect (and that those differences might be useful), adult autism will stay under the popular radar. Or if it does become more visible, it will be the same miracle cure quick buck angle that we see with childhood autism.
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