Believers in neurodiversity, please help de-program me (long, I'm sorry) - Page 3 - Mothering Forums

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Old 04-24-2008, 07:52 PM
 
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Oh, and feebeegee, I SO want to hear your thoughts on floortime...so intriguing. I don't think I've ever heard anyone critique it. Are you sure you won't take the risk and share??
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Old 04-24-2008, 10:37 PM
 
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HFA stand for High Functioning Autism. I'm not sure if you meant that you didn't know the acronym or that you were opposed to categorizing people on the basis of functioning level. I'm just trying to cover all bases.
Coming back to post, but just for now:

"HFA" does not exist in the DSM. It's a completely subjective judgment. Some people use it solely to mean Asperger's Syndrome, some won't apply it to AS at all, but only to classic autism that seems somehow "milder" to the eye of the beholder. It has no real meaning. Therefore, it's absurd to speculate about marriage statistics for "HFA"s. It's like saying "10% of really nice guys will be cheated on by their girlfriends." WHo defines "really nice?"

These discussions might be more productive if we limited ourselves to terminology with agreed-upon definitions.

ETA: I see a lot of you already covered this, and that's good. It also seems that this term is being used by a lot of early childhood "assessors." I for one am hesitant to go for scientific terminology to someone who majored in education.
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Old 04-24-2008, 10:47 PM - Thread Starter
 
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I can't come up with a good way to put what I don't like about RDI (and Floortime too) core philosophy without sounding like I'm looking for a fight, so I won't try today. I think they're both sure fun to do with your kid though.
Oh, and feebeegee, I SO want to hear your thoughts on floortime...so intriguing. I don't think I've ever heard anyone critique it. Are you sure you won't take the risk and share??
Yes, I agree! Please share with us?
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Old 04-24-2008, 10:59 PM
 
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Originally Posted by Individuation View Post
Coming back to post, but just for now:

"HFA" does not exist in the DSM. It's a completely subjective judgment. Some people use it solely to mean Asperger's Syndrome, some won't apply it to AS at all, but only to classic autism that seems somehow "milder" to the eye of the beholder. It has no real meaning. Therefore, it's absurd to speculate about marriage statistics for "HFA"s. It's like saying "10% of really nice guys will be cheated on by their girlfriends." WHo defines "really nice?"

These discussions might be more productive if we limited ourselves to terminology with agreed-upon definitions.
I know that. I was just wondering if she meant what's HFA as in what does the acronym stand for or not. I was diagnosed by a specialist as having Asperger syndrome. I know that doesn't automatically make me more "high functioning" than someone with Kanner's autism just because I can talk. There are people who were classified AS who choose not to talk or, for some reason, lose their ability to talk. Some people lose that ability and gain it many times in their lifetime. There are people who would be dxd with Asperger's as adults but were dxd as having Kanner's as children and vice versa. I am more "high functioning" at some things and very "low functioning" with other things. I also know that HFA isn't in the DSM. It's just another way people who see themselves as "higher functioning" than those with Kanner's autism can separate themselves from them. I choose to call myself autistic even though I have Asperger's and there are people who would argue that I am not autistic. I only separate them by who discovered each one for clarification because, to most people, they are separate, and they are listed as separate diagnoses in the DSM.

I also don't like the statistic that only 1% of "HFA" people get married. Who cares? It's just another way "experts" can justify trying to cure us. "Only 1% of them get married! You want your child to get married someday, don't you? Well then you need (insert therapy/quack cure here)! Otherwise he'll be lonely forever and probably have to be put in an institution." How would anyone know that for sure? I'm curious as to how they came up with that statistic. How many people did they poll? There are plenty of people who would be dxd with an ASD who choose not to get evaluated. and I'm sure there are plenty of those people who are married. It just seems off to me, YK?
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Old 04-25-2008, 12:23 AM
 
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I know that.
I know you do. I wasn't actually talking to you, although since your subsequent post was interesting, I'm rather glad you thought I was.

For me, I've been diagnosed with AS, even though I was told that I meet the current (new) diagnostic criteria for real, big, bad Kanner autism. Specifically, although I never had delayed language (and in fact had accelerated language), I had selective mutism and still have several verbal issues, including stereotyped speech and forms of verbal "stimming." In addition, I technically have some "self-care" issues, IE could probably not live alone as I have trouble keeping myself fed and so on. Those two things push me over the AS-to-Autism "edge."

However, like many parents who have gotten the diagnosis that will avail them the best services will understand, it was decided that Asperger's Syndrome, as a fairly well-known condition and the one that I most "look like," would be better in terms of disability services, etc. It was the diagnosis that most people wouldn't challenge, while Autistic Disorder would give a false impression that I'm much less interactive than I am, and perhaps lead people to believe I have problems I do not have.

That 1% statistic is such a line of crap I'm having a hard time keeping this post PG, by the way. Let's look at the social-control implications of such a statement for a minute, mmmmmmkay? Even if it were true (which I absolutely doubt, given the large number of married, undiagnosed adults), and even if it weren't already invalid by being based on a faulty bit of terminology, well... let's take it at face value.

Have any of you any idea how much romantic relationships have been discouraged among the developmentally disabled? That it was only recently that Down syndrome people became legally able to marry? That a huge number of autistic (even "HFA" ) adults were institutionalized or placed in residential programs that refused to allow their prisoners (sorry, "patients") the ability to connect with each other romantically?

No? Then how about how completely infantilized people with developmental disabilities often are? How about the fact that autistic men are often seen as being dangerously unable to control themselves and autistic women so ripe for "exploitation" that they must be protected from developing normal sexual expression in ways that might lead to marriage?

To quote a statistic like that egregious 1% nonsense is really, really off. I'm kind of surprised at a few of you. Look at the society before you start ascribing social conditions to the nature of autism. In Nazi-frickin-Germany (yes, I am in fact Going There), I bet less than 1% of autistics got married, because they were systematically being exterminated.

As for "Theory of Mind", Baron-Cohen is a very smart man who came up with some utterly asinine theories (autism as hyper-maleness, anyone?) based on the crap information available at the time. I'll see your "theory of mind" and raise you one "refrigerator mother theory," if you'd like to play with outdated, divisive, derogatory "theories."

Babysbum, seriously, if you want to play with bad statistics, why not just go by the anecdotal evidence? How many autistic adults do you actually know? I bet at least half of them (and I'm being generous) are from this board. And most of us are pretty verifiably real people, you can pretty much find me online and ascertain that the stuff I say about myself is true, and it's the same with at least Shaggydaddy. So let me ask you something:

Of the "HFA" adults that you know, how many are married?

Are you getting a number more like 30%? 80%? Honestly, I don't think you know very many autistic adults IRL, because if you went around saying that "theory of mind" stuff you wouldn't be knowing them for very long, so based on this itty bitty unscientific sample, doesn't it look like pretty damn near all the autistic adults you know, close to 100%, are in stable, loving marriages? That's quite a bit better than the general population, you know!

Now, obviously, there's a lot wrong with using this group for statistics. It's a self-selected sample from a parenting board, for heaven's sake. OK. Fine. But maybe it might make you think about where that 1% statistic is coming from--did that doctor even have access to the married autistics? Most of the ones I know are practically in hiding. With good reason.
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Old 04-25-2008, 12:27 AM - Thread Starter
 
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Of the "HFA" adults that you know, how many are married?
I don't think this was directed toward me, but I actually know several people, some of whom were officially diagnosed and some of whom were self-dx'ed as AS or HFA ... and all of them are married.

Even that aside, why is being married the be-all-end-all of a sucessful life? Plenty of people don't get married ...even NT people! =O Marriage isnt everything. Look at Temple Grandin - she's a success by anyone's standards, isn't she? She's not married. She's celebate by choice.
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Old 04-25-2008, 12:31 AM
 
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yeah, all 3 I've come across so far in my life are married of course, I'm biased, I met them on parenting boards
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Old 04-25-2008, 12:35 AM
 
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Originally Posted by JBug View Post
Even that aside, why is being married the be-all-end-all of a sucessful life? Plenty of people don't get married ...even NT people! =O Marriage isnt everything. Look at Temple Grandin - she's a success by anyone's standards, isn't she? She's not married. She's celebate by choice.
me and dh were discussing this today. Who cares, NT or not if they marry or have relationships or not? Why must it be seen as a MUST in order to live a "normal" life?

Cliff Richard has been a bachelor all his life, he has no disability.

If my ds, or any child after him never sees marriage or a steady relationship as a goal in their life, so what? they arnt going to shrivel up and die, there is nothing wrong with choosing to be single.
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Old 04-25-2008, 12:35 AM
 
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Originally Posted by JBug View Post
Even that aside, why is being married the be-all-end-all of a sucessful life? Plenty of people don't get married ...even NT people! =O Marriage isnt everything. Look at Temple Grandin - she's a success by anyone's standards, isn't she? She's not married. She's celebate by choice.
I know. I was just tweaking the "evidence" to show that we could come up with "statistics" that say that autistics are actually more likely to be married than the general population! Which should give us pause, I think, about those statistics.
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Old 04-25-2008, 01:06 AM
 
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Originally Posted by Individuation View Post
I know you do. I wasn't actually talking to you, although since your subsequent post was interesting, I'm rather glad you thought I was.

For me, I've been diagnosed with AS, even though I was told that I meet the current (new) diagnostic criteria for real, big, bad Kanner autism. Specifically, although I never had delayed language (and in fact had accelerated language), I had selective mutism and still have several verbal issues, including stereotyped speech and forms of verbal "stimming." In addition, I technically have some "self-care" issues, IE could probably not live alone as I have trouble keeping myself fed and so on. Those two things push me over the AS-to-Autism "edge."

However, like many parents who have gotten the diagnosis that will avail them the best services will understand, it was decided that Asperger's Syndrome, as a fairly well-known condition and the one that I most "look like," would be better in terms of disability services, etc. It was the diagnosis that most people wouldn't challenge, while Autistic Disorder would give a false impression that I'm much less interactive than I am, and perhaps lead people to believe I have problems I do not have.

That 1% statistic is such a line of crap I'm having a hard time keeping this post PG, by the way. Let's look at the social-control implications of such a statement for a minute, mmmmmmkay? Even if it were true (which I absolutely doubt, given the large number of married, undiagnosed adults), and even if it weren't already invalid by being based on a faulty bit of terminology, well... let's take it at face value.

Have any of you any idea how much romantic relationships have been discouraged among the developmentally disabled? That it was only recently that Down syndrome people became legally able to marry? That a huge number of autistic (even "HFA" ) adults were institutionalized or placed in residential programs that refused to allow their prisoners (sorry, "patients") the ability to connect with each other romantically?

No? Then how about how completely infantilized people with developmental disabilities often are? How about the fact that autistic men are often seen as being dangerously unable to control themselves and autistic women so ripe for "exploitation" that they must be protected from developing normal sexual expression in ways that might lead to marriage?

To quote a statistic like that egregious 1% nonsense is really, really off. I'm kind of surprised at a few of you. Look at the society before you start ascribing social conditions to the nature of autism. In Nazi-frickin-Germany (yes, I am in fact Going There), I bet less than 1% of autistics got married, because they were systematically being exterminated.

As for "Theory of Mind", Baron-Cohen is a very smart man who came up with some utterly asinine theories (autism as hyper-maleness, anyone?) based on the crap information available at the time. I'll see your "theory of mind" and raise you one "refrigerator mother theory," if you'd like to play with outdated, divisive, derogatory "theories."

Babysbum, seriously, if you want to play with bad statistics, why not just go by the anecdotal evidence? How many autistic adults do you actually know? I bet at least half of them (and I'm being generous) are from this board. And most of us are pretty verifiably real people, you can pretty much find me online and ascertain that the stuff I say about myself is true, and it's the same with at least Shaggydaddy. So let me ask you something:

Of the "HFA" adults that you know, how many are married?

Are you getting a number more like 30%? 80%? Honestly, I don't think you know very many autistic adults IRL, because if you went around saying that "theory of mind" stuff you wouldn't be knowing them for very long, so based on this itty bitty unscientific sample, doesn't it look like pretty damn near all the autistic adults you know, close to 100%, are in stable, loving marriages? That's quite a bit better than the general population, you know!

Now, obviously, there's a lot wrong with using this group for statistics. It's a self-selected sample from a parenting board, for heaven's sake. OK. Fine. But maybe it might make you think about where that 1% statistic is coming from--did that doctor even have access to the married autistics? Most of the ones I know are practically in hiding. With good reason.
This is certainly true, and I would add, married autistics sometimes have to be in hiding for the specific purpose of protecting their spouses. The only reason I have for being in hiding IRL is to prevent confirmation of the gossip that already surrounds my husband for "taking advantage of a mentally disabled woman." And given that every man I have ever befriended, let alone dated, has received this criticism, I would attest that this is indeed an impediment to formation of relationships.
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Old 04-25-2008, 03:12 AM
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This is certainly true, and I would add, married autistics sometimes have to be in hiding for the specific purpose of protecting their spouses. The only reason I have for being in hiding IRL is to prevent confirmation of the gossip that already surrounds my husband for "taking advantage of a mentally disabled woman." And given that every man I have ever befriended, let alone dated, has received this criticism, I would attest that this is indeed an impediment to formation of relationships.
i'm curious about this. it's come up before. type does away with so many social signals that your posts read as normal (or a little more intelligent) as most so my perception of you is one of a typical, bright person with many unusual and interesting ideas. what is it that makes people say this about your husband and yourself? if they do not know your diagnosis i assume it has something to do with speech patterns or body language and such. if you don't wish to answer i understand. just curious.
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Old 04-25-2008, 01:51 PM
 
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Oh man! I missed this thread while I was gone! I want to add in a few thoughts about the manners thing. The way I see it, is that we have to allow for diversity in what comes naturally to people. Some will feel great satisfaction from being kind and generous, and these are the people for whom those kinds of teachings make more sense. It bugs me that so much of our media's approach to children is that they should *all* be polite and help others and say please and thank you or whatever in order to be worthwhile in our culture. Isn't it possible that some people have other areas to contribute to? And that those areas are also important in entirely different ways? My son is not self-obsessed, but he is defintely less concerned with being kind than, say, learning something new on the computer and sharing it with others. He's a naturally curious, thoughtful, and gentle person, but I doubt helping others is going to be where he shows his strength. My other son, on the other hand, is very concerned with what others are thinking/feeling, and it is obvious to me that he'll get satisfaction from helping others and even pleasing them by being polite. Meanwhile, though, he has a harder time waiting for his turn, while Ezra (autistic) gets pleasure from watching someone else take a turn.

All to say, when it comes to manners, I think it's too easy to assume all people must be kind and helpful, etc. when in fact not everyone will do well with that or ever feel fulfilled by it, no matter how much you try to teach it. I think that that's a good thing myself.
Thanks for this whole post. I have been trying to put this concept into words for years, and you did it for me
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Old 04-25-2008, 02:19 PM
 
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I really appreciate it being said here that getting married = happiness is just one more cultural neurotypical-centric idea. I'm completely NT, and yet I often wonder whether marriage was necessarily the right choice for me (no offense to my very wonderful husband; that notion is entirely about me). The idea that an autistic person may wind up not married (oh no! God forbid!) as part of a campaign to make us make them more "normal" has pissed me off for a long time.

The same is true with friendships. Some of you - a bit in the past now - read my Babble article about parenting Ezra and dealing with some of these feelings and frustrations. So many of the comments I got on that article were so off the mark, but a few that particularly annoyed me were ones that claimed that all autistic people are desperate for friendship, and if I don't make my son learn to make friends (in the way they would recognize), he'll be miserable. I don't doubt there are lots of autistics who want friends and don't know how to make them, but I'm so tired of people assuming this about my son. I think I know him pretty well, and I will confidently say that he is not very concerned with making friends, and I highly doubt he ever will be. He makes GREAT connections with certain people in his life, including DH and me and his little brother. He also connects with the other kids at his school, and when he does that he does it in a way that doesn't look like NT friendship. But it's clearly fulfilling for him. I think he'll always have real intimacy like that with maybe one or two other people in his life, including us as long as we're alive. But I'm quite sure he gets his feeling of purpose, of life fulfillment and satisfaction, from something other than those connections.

Another post I saw that really pissed me off was one by a mother who said that children's autistic behavior is "cute" when they're little, but when they become teenagers, it's not cute anymore. Don't even get me started...that's a topic for another time.
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Old 04-25-2008, 03:47 PM
 
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I'm a full grown pretty much NT adult, and I dont know how to make freinds very well, nor do i really want any, they are to much work, and I dont want to deal with judgement about things they may know nothing about etc. Online freinds are fine with me for now.
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Old 04-25-2008, 04:35 PM
 
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Another post I saw that really pissed me off was one by a mother who said that children's autistic behavior is "cute" when they're little, but when they become teenagers, it's not cute anymore. Don't even get me started...that's a topic for another time.
I read something by Jenny McCarthy (don't ask me why, I just did) about that. She was talking about when her son was first diagnosed and the psychologist pointed out that he hand flaps. She wrote that she thought it was cute and called him a little penguin but now that she was told that it's a sign of autism, it's no longer cute. I read something else that hit more on the cute as kids but not as teens mark, but I forget what it was.
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Old 04-25-2008, 05:28 PM
 
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from very early on jenny called her child an indigo child, she had a board and everything, he was described as unique, and nothing was wrong that he did or anything that needed to be changed, once she got the autisim dx, she did a 360 and he suddenly needs curing.
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Old 04-25-2008, 06:23 PM
 
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i'm curious about this. it's come up before. type does away with so many social signals that your posts read as normal (or a little more intelligent) as most so my perception of you is one of a typical, bright person with many unusual and interesting ideas. what is it that makes people say this about your husband and yourself? if they do not know your diagnosis i assume it has something to do with speech patterns or body language and such. if you don't wish to answer i understand. just curious.
I do look and sound noticeably "off," though most people wouldn't identify this as "autistic." My hands shake constantly; my eyes dart around; I sometimes have awkward speech. More high-strung than stereotypically autistic, but I guess that's enough.
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Old 04-28-2008, 01:48 PM
 
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I found it incredibly telling that there are 5 Autistic adults on this thread alone (Autistic and Aspergers) and I believe all of them are married. What does that do to the statistic? Not to mention marriage, doesn't equate to happiness or fullfillment. Most the Autistics I know don't go around telling people IRL, and its because of the stereotyping and judgement that comes back. And up until more recently, if you could "function" you were not diagnosed as Autistic. And the population that is now getting diagnosed more frequently is not even of marrying age yet. When our kids get to be adults then you may have a more acurate statistic to work with.

I can totally see my Ds (who has Kanner's Autism, ie: comonly known as Classic Autism) getting married. He'll make some woman VERY happy. He's very attuned to how he looks, his room is as neat as a pin. He aims to please and doesn't mind chores. He's creative, artistic, smart and oh so cuddly. He has a crush on his sister's friend as well. (And she has a crush on him... its incredibly cute)

But, I doubt you'd even know if someone you know has Autism. Society has trained us to "fit in". If you saw me walking through the store with my ear buds in and my hand up near my chest rolling my fingers... you wouldn't think Autistic. You'd probably think.. "Wow, how juvenile of her to wear a headset and drown everyone out. And what.. does she have a booger she's trying to roll off her fingers?" lol. Or when you engage me in conversation you may think I'm rude for staring you down (because I was taught you HAD to make eye contact) and then eventually averting my eyes and spend the rest of the time looking past you or everywhere else but you. But you wouldn't think Autism.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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Old 04-28-2008, 05:57 PM
 
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I found it incredibly telling that there are 5 Autistic adults on this thread alone (Autistic and Aspergers) and I believe all of them are married. What does that do to the statistic?
Well, for one thing, it makes an interesting point about how susceptible people are to the "authority" of "experts." You can personally know five married autistics, but if Dr. Expert says 1%, that's the stat you quote. Interesting, isn't it?
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