Comments on: Quirky, NOS http://www.blisstree.com/articles/quirky-nos/ Family, Health, Home and Lifestyles Sun, 06 Dec 2009 13:54:05 -0500 http://wordpress.org/?v=2.8.4 hourly 1 By: Cliff http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-539542 Cliff Sun, 16 Sep 2007 01:54:07 +0000 http://www.autismvox.com/quirky-nos/#comment-539542 You know, I guess there isn't a point where you are "fully" recovered, but that you get along regardless. I still have some things that are somewhat impractical (have an odd hatred of phones, can't go to movies because of sensory issues, etc.). And then there are the oddities (can only speak loudly, fairly loudly, and extremely quietly). But, for the most part, I can pass off without one knowing. It's usually some huge surprise, which really is flattering in some regards, but withholding everything is far more of an issue. That can be a disservice to those trying to know me and to myself, who has a load of different issues in the day which often get ignored, causing me to be in truly repulsive situations. At one point, my parents and others thought that I really had "transcended" autism. and in retrospect they admit they were very wrong to think that. At some level, it was just me hiding issues because everyone else was handling them (not true, but I was given no particular reason to think otherwise). I can easily say my self-confidence was enhanced with the understanding than without. It's funny, because I'm asked "Are you sure about that?" or told "It must be a really light variation". If only they could see my home videos where I am hitting myself in order to get rid of a sensory issue, attacking a therapist with a toy truck, or running away screaming from my sister's birthday party (she's forgiven me later). And even now I'm really the same person with some new learned things, almost like learning which fork goes with salad and the like. I do understand, though, that sometimes you don't really want that information out, because of practical bearings. Exactly how this balance works, allowing your children to know while not having them regularly tell as such until they really aren't going to be judged by it, is one I'm not sure about. I might hope, though, the best for everyone regarding their children reaching new heights. And thank you for the compliments. Cliff You know, I guess there isn’t a point where you are “fully” recovered, but that you get along regardless. I still have some things that are somewhat impractical (have an odd hatred of phones, can’t go to movies because of sensory issues, etc.). And then there are the oddities (can only speak loudly, fairly loudly, and extremely quietly). But, for the most part, I can pass off without one knowing. It’s usually some huge surprise, which really is flattering in some regards, but withholding everything is far more of an issue. That can be a disservice to those trying to know me and to myself, who has a load of different issues in the day which often get ignored, causing me to be in truly repulsive situations.
At one point, my parents and others thought that I really had “transcended” autism. and in retrospect they admit they were very wrong to think that. At some level, it was just me hiding issues because everyone else was handling them (not true, but I was given no particular reason to think otherwise). I can easily say my self-confidence was enhanced with the understanding than without.
It’s funny, because I’m asked “Are you sure about that?” or told “It must be a really light variation”. If only they could see my home videos where I am hitting myself in order to get rid of a sensory issue, attacking a therapist with a toy truck, or running away screaming from my sister’s birthday party (she’s forgiven me later). And even now I’m really the same person with some new learned things, almost like learning which fork goes with salad and the like.
I do understand, though, that sometimes you don’t really want that information out, because of practical bearings. Exactly how this balance works, allowing your children to know while not having them regularly tell as such until they really aren’t going to be judged by it, is one I’m not sure about.
I might hope, though, the best for everyone regarding their children reaching new heights. And thank you for the compliments.
Cliff

]]> By: Dan http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-540596 Dan Sat, 15 Sep 2007 22:36:36 +0000 http://www.autismvox.com/quirky-nos/#comment-540596 Cliff, Thanks. Your insights are incredible for me to read! I really can't thank you enough for sharing. (Ditto for everyone else, too.) We're opting to be as open as possible with (about) our boys, but I want to have the option (also) of shutting off the dx (as far as advertising it) when we want (or when they want to). As an analogy, some friends of mine years ago had several adopted children (who happend to be of different races), and several biological children. When the subject of adoption came up, they say things like "3 of kids are adopted...can't remember which 3." I want to use that line about my kids. ("Yeah, we got auties in the family...can't remember which one(s).") I don't know we'll ever be to the point of being able to say that. I do worry about that, but I have to set that worry aside (leave it in God's hands), and focus on today. Kristina, you ask a loaded question with "how can a child be really recovered." It's the whole 'cure' thing all over (with associated side-bars on identity, etc). I suspect my boys will always have 'elements' of autism in their lives; I feel like I do, and I don't consider myself to be on the spectrum. (Quirky? Yes, but that's another whole book to write.) I don't want to eradicate the whole of autism, since that entails much of what I love as well as don't love about my kids. Looking at it as a developmental ladder, I want to see my kids get to the highest rung available to them. To include communication, social interaction, awareness of their environment, personal independence, etc. Of course, I want the same for my NT daughter. Heck, I want that for me, too! And, if I haven't said it recently enough, loud enough, thanks again for an awesome blog. Regards, Dan So. Maine Cliff,

Thanks. Your insights are incredible for me to read! I really can’t thank you enough for sharing. (Ditto for everyone else, too.)

We’re opting to be as open as possible with (about) our boys, but I want to have the option (also) of shutting off the dx (as far as advertising it) when we want (or when they want to).

As an analogy, some friends of mine years ago had several adopted children (who happend to be of different races), and several biological children. When the subject of adoption came up, they say things like “3 of kids are adopted…can’t remember which 3.”

I want to use that line about my kids. (”Yeah, we got auties in the family…can’t remember which one(s).”)

I don’t know we’ll ever be to the point of being able to say that. I do worry about that, but I have to set that worry aside (leave it in God’s hands), and focus on today.

Kristina, you ask a loaded question with “how can a child be really recovered.” It’s the whole ‘cure’ thing all over (with associated side-bars on identity, etc). I suspect my boys will always have ‘elements’ of autism in their lives; I feel like I do, and I don’t consider myself to be on the spectrum. (Quirky? Yes, but that’s another whole book to write.) I don’t want to eradicate the whole of autism, since that entails much of what I love as well as don’t love about my kids. Looking at it as a developmental ladder, I want to see my kids get to the highest rung available to them. To include communication, social interaction, awareness of their environment, personal independence, etc. Of course, I want the same for my NT daughter. Heck, I want that for me, too!

And, if I haven’t said it recently enough, loud enough, thanks again for an awesome blog.

Regards,

Dan
So. Maine

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-540566 Kristina Chew, PhD Sat, 15 Sep 2007 12:38:36 +0000 http://www.autismvox.com/quirky-nos/#comment-540566 ange, we're a family of quirks too. Charlie's being autistic and understanding his "different" wiring has led to Jim and me being more honest about ourselves----not always easy to own up to but ultimately, as Cliff points out. Cliff, thank you for writing here----my son has a Lovaas consultant and, when he was much younger, I read the books by parents who had "recovered" their children from autism through ABA, or whose children had "lost" their diagnosis. This initially seemed an elusive goal and it soon became apparent that this would not happen for Charlie, who has always been in special ed classrooms and does not have a lot of language. Charlie has been aware of being different for awhile. I really have to thank you again for writing here. My husband and I have often asked ourselves, how could a child really recover? They might be mainstreamed, be academically at grade level if not above, speak clearly but wouldn't some difference still be there, we wondered.........even when Charlie has learned speech or how to do certain skills, he does them in his "Charlie" way. And that's the best way for him. As a parent, I felt really freed to stop thinking about "recovery" and all that----much in our life with Charlie has been unexpected and different, and I've learned more than I thought I could thanks to him. ange, we’re a family of quirks too. Charlie’s being autistic and understanding his “different” wiring has led to Jim and me being more honest about ourselves—-not always easy to own up to but ultimately, as Cliff points out.

Cliff, thank you for writing here—-my son has a Lovaas consultant and, when he was much younger, I read the books by parents who had “recovered” their children from autism through ABA, or whose children had “lost” their diagnosis. This initially seemed an elusive goal and it soon became apparent that this would not happen for Charlie, who has always been in special ed classrooms and does not have a lot of language. Charlie has been aware of being different for awhile.

I really have to thank you again for writing here. My husband and I have often asked ourselves, how could a child really recover? They might be mainstreamed, be academically at grade level if not above, speak clearly but wouldn’t some difference still be there, we wondered………even when Charlie has learned speech or how to do certain skills, he does them in his “Charlie” way.

And that’s the best way for him. As a parent, I felt really freed to stop thinking about “recovery” and all that—-much in our life with Charlie has been unexpected and different, and I’ve learned more than I thought I could thanks to him.

]]> By: Cliff http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-539298 Cliff Sat, 15 Sep 2007 02:02:44 +0000 http://www.autismvox.com/quirky-nos/#comment-539298 As far as my diagnosis, I found it something of a relief. I hadn't learned of my diagnosis until I was seventh grade. My parents hadn't shared information on my diagnosis on the advice of UCLA, coming off Ivar Lovass' program. They were able to avoid that because I had it, then had it stripped when I no longer "exhibited sufficient autisitc traits for the diagnosis" (essentially, I could trick the test-giver into thinking my mind was now normal). Now, practicalyl it worked at the time, because it didn't carry the stigma (the stigma, as great as it is now, was much worse then), and I learned n a regular environment. However, they also avioded talking about it with me (also on the advice of UCLA). While this was useful in the short term, it had long-term consequences. I wasn't oblivious to that I was different. It was obvious to me in first grade I really was different, especially when I got put in a "friendship" program, an evasive way to associate me with the mentally retarded kid at school. And I wasn't competent at school, less for my thoughts as the inability to write anything that could be read and for soem residual communication issues. Of coruse, the "autism" diagnosis I had never heard of didn't come to mind. I then thought I was mentally retarded, a thought held for another four years. After that, I was "deficient", and when I got a 140 on an IQ test (having gotten 60 pre-diagnosis and a 100 just after being stripped of the diagnosis), I was "wacked". When I finally found a letter that mentioned it, I looked it up online. It all clicked. I wasn't some deficient psychotic freak-child anymore. And that was really freeing. I think that it made my life overall much more understandable, and I was suddenly able to comunicate things I hadn't before. I even learned I had different sensory input; everyone wasn't incredibly stoic, they just percieved the world very differently. So, given that whole aspect of my life, I believe that a diagnosis is useful for the child, if anything. There is an issue of when to talk in-depth about it, though; I'd probably start about the sex-ed time so (perhaps a little later) that the child doesn't overrepresent it or use it immaturely. But, in the long run, it's really important and freeing. As far as my diagnosis, I found it something of a relief. I hadn’t learned of my diagnosis until I was seventh grade. My parents hadn’t shared information on my diagnosis on the advice of UCLA, coming off Ivar Lovass’ program. They were able to avoid that because I had it, then had it stripped when I no longer “exhibited sufficient autisitc traits for the diagnosis” (essentially, I could trick the test-giver into thinking my mind was now normal). Now, practicalyl it worked at the time, because it didn’t carry the stigma (the stigma, as great as it is now, was much worse then), and I learned n a regular environment. However, they also avioded talking about it with me (also on the advice of UCLA).
While this was useful in the short term, it had long-term consequences. I wasn’t oblivious to that I was different. It was obvious to me in first grade I really was different, especially when I got put in a “friendship” program, an evasive way to associate me with the mentally retarded kid at school. And I wasn’t competent at school, less for my thoughts as the inability to write anything that could be read and for soem residual communication issues.
Of coruse, the “autism” diagnosis I had never heard of didn’t come to mind. I then thought I was mentally retarded, a thought held for another four years. After that, I was “deficient”, and when I got a 140 on an IQ test (having gotten 60 pre-diagnosis and a 100 just after being stripped of the diagnosis), I was “wacked”.

When I finally found a letter that mentioned it, I looked it up online. It all clicked. I wasn’t some deficient psychotic freak-child anymore. And that was really freeing. I think that it made my life overall much more understandable, and I was suddenly able to comunicate things I hadn’t before. I even learned I had different sensory input; everyone wasn’t incredibly stoic, they just percieved the world very differently.
So, given that whole aspect of my life, I believe that a diagnosis is useful for the child, if anything. There is an issue of when to talk in-depth about it, though; I’d probably start about the sex-ed time so (perhaps a little later) that the child doesn’t overrepresent it or use it immaturely. But, in the long run, it’s really important and freeing.

]]> By: ange http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-539165 ange Fri, 14 Sep 2007 14:35:04 +0000 http://www.autismvox.com/quirky-nos/#comment-539165 We are a family of "quirky." When I got an OCD dx a few years ago, I remember relief. I thought a) everyone had many of the obsessive symptoms I had but I couldn't cope (and was thus a failure) and b) that some of the intrusive, compulsive thoughts I was having were actually intentional thoughts and I was therefore a bad/extremely weird person. We joke all the time about Hubby's ADHD. Never officially dx, but it's just known. After we had our own quirky boys, our marriage improved (eventually!) so much because I was able to understand that my husband's quirks, attention issues, and impulsivity are not intentional to tick me off. Yeah, I still get angry sometimes, but we have implemented many modifications and accomodations in our home. In order to get the boys what they need at school and for help at home so that their daily functioning isn't greatly impacted, we need the labels. When everything is working as it should, and it's a good day, we all seem "quirky." On days where modifications and support aren't available (naturally or otherwise)...well we are all kind of a mess and people look scared! We are a family of “quirky.” When I got an OCD dx a few years ago, I remember relief. I thought a) everyone had many of the obsessive symptoms I had but I couldn’t cope (and was thus a failure) and b) that some of the intrusive, compulsive thoughts I was having were actually intentional thoughts and I was therefore a bad/extremely weird person. We joke all the time about Hubby’s ADHD. Never officially dx, but it’s just known. After we had our own quirky boys, our marriage improved (eventually!) so much because I was able to understand that my husband’s quirks, attention issues, and impulsivity are not intentional to tick me off. Yeah, I still get angry sometimes, but we have implemented many modifications and accomodations in our home. In order to get the boys what they need at school and for help at home so that their daily functioning isn’t greatly impacted, we need the labels. When everything is working as it should, and it’s a good day, we all seem “quirky.” On days where modifications and support aren’t available (naturally or otherwise)…well we are all kind of a mess and people look scared!

]]> By: Club 166 http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-540306 Club 166 Thu, 13 Sep 2007 14:28:40 +0000 http://www.autismvox.com/quirky-nos/#comment-540306 Another one for Dan: Searching for the correct path Diagnose or no Oh to have a happy swan Joe Another one for Dan:

Searching for the correct path
Diagnose or no
Oh to have a happy swan

Joe

]]> By: AnneC http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-540325 AnneC Thu, 13 Sep 2007 05:54:14 +0000 http://www.autismvox.com/quirky-nos/#comment-540325 Yes, it is definitely a relief, along the lines of what the title character of "The Ugly Duckling" probably felt (in the context of the story, at least) upon finding out he wasn't a duckling, and therefore it didn't make sense to describe himself as a deficient version of one thing when he was really a perfectly healthy "non-duckling" swan. Yes, it is definitely a relief, along the lines of what the title character of “The Ugly Duckling” probably felt (in the context of the story, at least) upon finding out he wasn’t a duckling, and therefore it didn’t make sense to describe himself as a deficient version of one thing when he was really a perfectly healthy “non-duckling” swan.

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-538910 Kristina Chew, PhD Thu, 13 Sep 2007 05:34:57 +0000 http://www.autismvox.com/quirky-nos/#comment-538910 Anne C, I'd hope that autistic can become more of a "value-neutral descriptor" for more people----"autism" being a word that does now evoke a lot of feelings and emotions from many persons. I think of the relief my husband Jim felt on learning several years ago that he has ADHD----he was able to think through why his brain functions as it does, why some things in school had been so difficult for him to learn, why he got certain "looks" from people too frequently. Anne C, I’d hope that autistic can become more of a “value-neutral descriptor” for more people—-”autism” being a word that does now evoke a lot of feelings and emotions from many persons. I think of the relief my husband Jim felt on learning several years ago that he has ADHD—-he was able to think through why his brain functions as it does, why some things in school had been so difficult for him to learn, why he got certain “looks” from people too frequently.

]]> By: gettingthere http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-540292 gettingthere Thu, 13 Sep 2007 04:12:45 +0000 http://www.autismvox.com/quirky-nos/#comment-540292 While I dislike labels and hesitated about getting a diagnosis, in the end, it was the AS word that got my son the one on one aide he needed so badly. It was a relief to both of us to know that he was not oppositional, insolent or stubborn or that I was not an incompetent mother, totally unfit for the role. While I dislike labels and hesitated about getting a diagnosis, in the end, it was the AS word that got my son the one on one aide he needed so badly. It was a relief to both of us to know that he was not oppositional, insolent or stubborn or that I was not an incompetent mother, totally unfit for the role.

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/quirky-nos/comment-page-1/#comment-540290 Kristina Chew, PhD Thu, 13 Sep 2007 03:55:21 +0000 http://www.autismvox.com/quirky-nos/#comment-540290 Dan: Emails in iambic pentameter: I don't know what could be better. Who doesn't have their quirks, And hidden ones may lurk.... Dan:

Emails in iambic pentameter:
I don’t know what could be better.
Who doesn’t have their quirks,
And hidden ones may lurk….

]]>