Guest guest Report post Posted June 8, 2010 Don't think " completely independent " is necessarily true. I think my independence is rather impaired. If I wasn't fortunate to have a husband that carries a lot of the load (financially, emotionally etc), I don't know where I would be. Hopefully not at home living with my aging parents! Miranda > >  > >  > > I somehow have lost the thread to this and was going torespond to > Roxanna’s comment that if there was a cure for autism shewould go for > it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. > We all love our children and we all will say we lovethem as they are. > But to say you wouldn’t want them cured of autismif that was possible > is just as silly as saying you wouldn’t want yourchild cured if they > had __________ (fill in the blank: diabetes, cancer,deafness, > blindness, the list could go on and on). Many of us on thisgroup have > kids who are older and we have spent years and years on > therapies,support, medications, and continue to see our kids struggle. > So, to sayyou wouldn’t want your child cured is silly (I am trying to > be nice as Ican think of much more appropriate, though less politically > correct, language). >  > > >  >  > >  > >  > >  > >  > > “Here's to the crazy ones, the misfits, the rebels, thetroublemakers, > the round pegs in the square holes... the ones who see > thingsdifferently -- they're not fond of rules... You can quote them, > disagree withthem, glorify or vilify them, but the only thing you can't > do is ignore thembecause they change things... they push the human race > forward, and while somemay see them as the crazy ones, we see genius, > because the ones who are crazyenough to think that they can change the > world, are the ones who do.â€Â  - Steve Jobs > >  > > “Here's to the crazy ones, the misfits, the rebels, the troublemakers, > the round pegs in the square holes... the ones who see things > differently -- they're not fond of rules... You can quote them, > disagree with them, glorify or vilify them, but the only thing you > can't do is ignore them because they change things... they push the > human race forward, and while some may see them as the crazy ones, we > see genius, because the ones who are crazy enough to think that they > can change the world, are the ones who do.â€Â  - Steve Jobs > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 I wouldn't mind so much staying introverted and quirky if I could be relieved of the sensory issues including food sensitivities. I think the bad outweighs the good in our family - the tantrums my son has (related to sensory overload and his rigid thinking) are extremely stressful to him and everyone around him Miranda > > > > I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language). > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 You're probably right - I've been interested in seeing various points of view, but it does start to sound like arguing. Sorry, but I posted a few more already Miranda > > > > > > > > > > > > I somehow have lost the thread to this and was going torespond to > > Roxanna's comment that if there was a cure for autism shewould go for > > it " in a heartbeat, half a heartbeat " . I totallyagree with Roxanna. > > We all love our children and we all will say we lovethem as they are. > > But to say you wouldn't want them cured of autismif that was possible > > is just as silly as saying you wouldn't want yourchild cured if they > > had __________ (fill in the blank: diabetes, cancer,deafness, > > blindness, the list could go on and on). Many of us on thisgroup have > > kids who are older and we have spent years and years on > > therapies,support, medications, and continue to see our kids struggle. > > So, to sayyou wouldn't want your child cured is silly (I am trying to > > be nice as Ican think of much more appropriate, though less politically > > correct, language). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > " Here's to the crazy ones, the misfits, the rebels, thetroublemakers, > > the round pegs in the square holes... the ones who see > > thingsdifferently -- they're not fond of rules... You can quote them, > > disagree withthem, glorify or vilify them, but the only thing you can't > > do is ignore thembecause they change things... they push the human race > > forward, and while somemay see them as the crazy ones, we see genius, > > because the ones who are crazyenough to think that they can change the > > world, are the ones who do. " - Steve Jobs > > > > > > > > " Here's to the crazy ones, the misfits, the rebels, the troublemakers, > > the round pegs in the square holes... the ones who see things > > differently -- they're not fond of rules... You can quote them, > > disagree with them, glorify or vilify them, but the only thing you > > can't do is ignore them because they change things... they push the > > human race forward, and while some may see them as the crazy ones, we > > see genius, because the ones who are crazy enough to think that they > > can change the world, are the ones who do. " - Steve Jobs > > > > > > > > > > " Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do. " - Steve Jobs > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 i didnt even think of it that way, i hear ppl all the time say they dont want a cure just acceptance, babble about einstein, bach, davinci, etc and how much a cure would change everyone. I never even considered the plight of the low functioning autistic child. I guess b/c ppl tend to be selfish and think about themselves. b/c my thought is always that those people must have happy hfa children or at the very least they have laid back ones b/c mine isnt either, mine can get physical, mine can have mood swings and mind can be impulsive, after severely long tantrums (or hitting, etc) she then settles down to beat herself up about what she did so she goes from uncontrollable and driving me to want to jump off the roof to very sad and upset with herself. I would love a cure, I would settle on a partial cure, a medication that would help. Id be happy with a kid who was just quirky On Tue, Jun 8, 2010 at 4:07 PM, Roxanna <MadIdeas@...> wrote: It is total BS that only people with autism invented everything in the world. It's nice your kid is high functioning enough that you can be glad he has a disability. But I promise there are a lot of people with more severe autism who are not able to speak up for themselves. Temple grandin makes a lot of money writing books, speaking and has a job doing what she loves. It's always nice to be someone who can do what they like, get paid a good wage and live independently. I hardly find that to be a barometer for whether having autism is a wonderful thing, though.It's nice if you can discuss " fake me's " and all that with your kid. I have a friend who has a kid who can't even use a communication device, let alone tell her how wonderful it is to wake up with poop his pants and have to be washed by other people. Well, I just assume he would say how great this autism stuff is if he could talk because everyone so far seems to think it's a wonderful disability to have. I'll ask him next time I see him how great it is to be autistic but I suspect he'll just be looking at the ground and stimming, oblivious to everything around him. last time, he actually said, " Hi! " to me (or towards me really) and I was impressed. I think he still has a way to go before he can form the words, " Having autism has made me what I am today. " Hope he is working on that, though...maybe we can program it into his augmentative device? I'll ask his mom. RoxannaWhenever I feel blue, I start breathing again. Re: ( ) Cure Yes my son is only 10, but he has it hard already, still I would not want to cure him, and no I do not agree with the aforementioned comment about the comparison of Aspergers being close to cancer, or any other deadly problem. People DIE from cancer my son is alive and well, he has a rough road, no friends, but he is smart, he is inventive, he is loved and he is who he is. I work with the intellectually and physically disabled, I love them all for who they are, even the individuals who can turn on me and beat me to a pulp I love them, I understand them. I am so tired of people wanting a " fix " , god had a purpose to his design in each of us, he didn't make a mistake, and BTW do you like you computers, the cool software you have installed on them, how about your ,light bulbs, DVR's, cell phones and art and music? If we all fit in that box we wouldn't have any of that, if it were not for Aspergers you wouldn't have most of it. Have any of you listened to Temple Grandin? Her road was hard, and so was her mothers, but she likes who she is, and does not want to be cured. I ask my son, my 10 year old if I could give you a pill to make you " normal " would you want it, and he said, no mom, I want friends, but I want them to like me for who I am, I don't want them to like a fake me. I think that speaks volumes. If we are not accepting our kids for who they are, how can we ask the world to? I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeat”. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs -- -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 ok I am a little late on this heated discussion but I thought I would throw my hat in the ring too. I would do anything to cure my daughter! My daughter seems perfect but she is not. She has trouble with eye contact and engages toys better than people. She also can not eat anything but purreed baby food. She walks drunk and needs a special med to help her talk. She is dx autism and my husband is an apsie. We are know working on getting her re--dx for RETT syndrome. If you do'nt know look it up. It is horrible. They can stop walking, talking, and eating by mouth! We are hoping she has atypical rett which means she may not regress. Her head has not grwon in almost 2 years and she has all the other signs of rett! I would do anything to save her. Even on her best days when she seems so "normal" I still want her to be without sin in perfect. I wish this for all of us though. We are all sinned we all have a defect. It may be less noticeable in others but we struggle with challenges and the bottom line is we all die eventually. I dream of a life where there is no pain no sorrow and no tears forever for all of us!CAthy I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 the other thing is pointed out in a roundabout way in the 2nd to last paragraph you wrote, if everyone is so accepting why is everyone spending so much time, money, etc treating the symptoms, why not just accept them? if everyone did just accept them would we even need a forum to get together and compare notes and ask for advice? but maybe i find it hard to believe all the geniuses in the world had autism or aspergers b/c i have an older dd who, except for being highly gifted maybe even a genius by certain iq score definitions, is otherwise nt. i see her, her friends and kids in the gt program, they are all a bit quirky, they all have passions and they are all extremely intelligent and some are geniuses. the way their thought processes and critical thinking skills work i see no reason why a person like that, a non autistic person, couldnt have invented any of those things. i dont know how temple gardin does it personally. i was dx adhd, ocd and depression as a teen and i know to this day i have sensory issues with some clothes and i know i had issues with textures of food as a kid (ok and maybe some now), basically all the main symptoms of a pdd, maybe just pdd-nos but still an asd, maybe i would have been diagnosed as such these days just has originally my dd got dx of not hfa but first adhd and bp. i can honestly say i have learned to cope and have made it without therapies (except speech but i did talk and was understandable, just not " perfect " ) or medications. but i would still want a cure for myself even, i hate having a limited wardrobe b/c if i wear something that will bother me all day (like buttons at the front of the waist) i will be grumpy, i hate feeling socially ackward before, during and after encounters as i worry about what i will say then just blurt out without thinking and then spend the day worrying about what i did do or say, i have learned to be extremely patient but that still doesnt mean i dont hate it when my fuse is short b/c i have too much going on. or the fact my house never gets completely clean b/c of the way i get distracted and go from activity to activity, the way i am so dependant on calenders, lists, etc, the way i can obsess over a topic so much it makes people upset or makes me depressed. the social aspects are the ones that bother me the most. i have friends but have never had a best or group of best friends b/c i dont initiate and dont know what to do. i would cure it without a 2nd thought On Tue, Jun 8, 2010 at 4:54 PM, Roxanna <MadIdeas@...> wrote: Thank goodness I am not alone. I was reading posts, trying to catch up and I was ready to throw in the towel if I read another " I love having autism " posts, like they are all Temple Grandin's out there. I guess part of my stress is having to actually LIVE with autism and it isn't this great and wondrous thing. I sometimes wonder if I live on an alternate planet or we didn't get into the " We want the autism that is fun and exciting instead of the autism that really sucks life out of us " line when it was being passed out. that would just be my luck. lolWhat I want to know is why it's only the " good " traits of autism that get noted in these discussions. And I even say " good " traits with sarcasm attached because it's only " good " if you make it work for you. And if you can't, then the world is out to get you by not being " Accepting " of your " differences. " I mean, kids who can " stare at something for long periods of time " means these are the people who created computers and microwaves. huh? I don't get how one equals the other. it's just taking a negative trait and trying to make it seem like a positive trait. Nobody is out there cheering for the kid with autism who is obsessively spinning for long periods of time. Don't we love that ability to focus? And don't we credit those kids with creating something great?It takes both sides of the coin and people leave out the flip side. They credit autism/AS with the entire being of these kids/people as if that is the end and beginning of who they are. Without autism, they would be this lifeless hanging puppet or worse (gasp) normal like the rest of us. lol. Well, there are a lot of people out here who are relatively normal and quite interesting, inventive, able to focus for long periods of time, create wonderful life altering inventions, think...And peeling off the autism doesn't change who that person is unless you are crediting " who " someone is entirely to a disability called Autism.Then there is a the subset of this one - where people say, " Well, I would not want to cure autism because I love my kid just the way he is. I would like to take away his tantrums, his inability to make friends, his persevering, his ADHD..... " and on and on (fill in the blanks with your kid's autistic traits.) And to me, that's just saying the same thing - you'd cure autism.I don't ever hear people with other neurological issues creating a " I AM MY DISABILITY " club. I don't hear people saying, for instance, " Don't teach him to read. He is dyslexic. Dyslexic people are really smart and great thinkers. If you teach him to read, you'll take away who he is! If you teach him how to read, his imagination will disappear! It's wrong of the world not to accept him for who he is and wrong for them to force him to conform and learn to read! " OF course, I don't really hang out in any dyslexia groups online. Maybe this club exists too. In which case, AUGH! lol. I have 2 kids with dyslexia and 2 with autism. We did ABA with the younger one who has HFA and I credit that with helping him to BE high functioning. It's because we did not accept that autism would be who he was or define who he was and what he could do that he is where he is today. I don't give autism credit for any of his good features and it has only been something that has prevented him from achieving to his potential all this time and made everything four times harder than it is for a typical person/kid. So I hate it and I'd love to make it go away so he could take advantage of all the good qualities and abilities that he does have - HE has, not autism has.I do not yet understand why people want to credit a disability for the inner being of who someone is. I was cringing with all this talk about asking kids if they would take a pill to " fix " who they are. I will not even go there because I have such a headache right now. But that is so far from the point. RoxannaWhenever I feel blue, I start breathing again. Re: ( ) Cure Yes my son is only 10, but he has it hard already, still I would not want to cure him, and no I do not agree with the aforementioned comment about the comparison of Aspergers being close to cancer, or any other deadly problem. People DIE from cancer my son is alive and well, he has a rough road, no friends, but he is smart, he is inventive, he is loved and he is who he is. I work with the intellectually and physically disabled, I love them all for who they are, even the individuals who can turn on me and beat me to a pulp I love them, I understand them. I am so tired of people wanting a " fix " , god had a purpose to his design in each of us, he didn't make a mistake, and BTW do you like you computers, the cool software you have installed on them, how about your ,light bulbs, DVR's, cell phones and art and music? If we all fit in that box we wouldn't have any of that, if it were not for Aspergers you wouldn't have most of it. Have any of you listened to Temple Grandin? Her road was hard, and so was her mothers, but she likes who she is, and does not want to be cured. I ask my son, my 10 year old if I could give you a pill to make you " normal " would you want it, and he said, no mom, I want friends, but I want them to like me for who I am, I don't want them to like a fake me. I think that speaks volumes. If we are not accepting our kids for who they are, how can we ask the world to? I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeat”. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs -- -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 The question i read was he you could cure as would you? I was also responding to being called silly for my point me view. And helping the as adults on here that said they don't want a cure! My so has not one real friend, if you knew what he endured at school this year you would pass out! He turns on me in i second, and i get to hear about star wars or military things every second i am around him, or how about it takes me hours at the store with him because he has to straighten the shelves so all me the labels face out. I do not focus on the bad, if i did i would sink into self pity. I choose to look at it with a smile, i love to watch him figure things out in a way i will never be able too. He can build massive lego sculptures (all star wars) that grown ups can't. I also work with individuals that have way worse disabilities than most people can even imagine, i have helped those who can't lift a spoon eat, i have changed adult briefs, and. I am sorry he it makes me a little gratefull that my son has as and not birds, or Mr or that he can walk and talk. By the way teaching a kid with dyslexia to read doesn't " cure " it, the just learn to live with it! My son is also dyslexic, and has adhd, he has anxiety to tin point he has shingle out breaks. I just said i am afraid a cure could change more than just his as. That's not a risk i want to take. Roxanna <MadIdeas@...> wrote: > >Well, if that is true then she is wrong. This is a group for parents >whose kids have AS and HFA. (My two ds's have HFA and not AS) We are >not an " AS only " group. Also, AS people are not guaranteed completely >independent lives as adults at all either. If they were all going to >do fine as adults, then I can see how one wouldn't be that worried and >how one might think having AS was just a " different way of thinking. " >However, that is not true at all. > >Also, autism is a spectrum disorder but that does not mean there is a >menu of problems that only certain people have within the spectrum. >Rather, it means they all have the same core problems with varying >severity. > >Roxanna >Whenever I feel blue, I start breathing again. > > > Re: ( ) Cure > > > > > > > > >Do people who can't even talk or communicate have aspergers? I think >she is referring to aspergers only--as this is an aspergers group. >Asperger children are even above high functioning autism on the >spectrum. They are completely independent as adults and do not have the >issues that other lower spectrum children have. >So I think she is referring to Aspergers--not the children who can't >communicate or participate. > > > > >Purrs & Kisses, >Kristal of Digi Kitty >The Kitty who loves Digi! >Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > > > > > > > > > > > > >I somehow have lost the thread to this and was going torespond to >Roxanna’s comment that if there was a cure for autism shewould go for >it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. >We all love our children and we all will say we lovethem as they are. >But to say you wouldn’t want them cured of autismif that was possible >is just as silly as saying you wouldn’t want yourchild cured if they >had __________ (fill in the blank: diabetes, cancer,deafness, >blindness, the list could go on and on). Many of us on thisgroup have >kids who are older and we have spent years and years on >therapies,support, medications, and continue to see our kids struggle. >So, to sayyou wouldn’t want your child cured is silly (I am trying to >be nice as Ican think of much more appropriate, though less politically >correct, language). > > > > > > > > > > > > > > >“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >the round pegs in the square holes... the ones who see >thingsdifferently -- they're not fond of rules... You can quote them, >disagree withthem, glorify or vilify them, but the only thing you can't >do is ignore thembecause they change things... they push the human race >forward, and while somemay see them as the crazy ones, we see genius, >because the ones who are crazyenough to think that they can change the >world, are the ones who do.â€Â  - Steve Jobs > > > >“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >the round pegs in the square holes... the ones who see things >differently -- they're not fond of rules... You can quote them, >disagree with them, glorify or vilify them, but the only thing you >can't do is ignore them because they change things... they push the >human race forward, and while some may see them as the crazy ones, we >see genius, because the ones who are crazy enough to think that they >can change the world, are the ones who do.â€Â  - Steve Jobs > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 I can see it now, Roxanna – you and I at the front of the cure line battling it out to see who gets it first. LOL!! My son is not as severely affected as some Aspies I know but he is affected enough that I wonder if he is ever going to learn the needed skills to be totally independent. And, while his IQ is genius level there is a huge disparity between IQ and performance.  He just finished a year of college – well, he went for a year though not real successfully. First semester he started out with 3 classes, dropped two, and made a B in one – o.k., could be better but not bad. Second semester he switched to a total computer track (still at the community college and getting college credits but only computer classes and in a program where he would get a certificate). Again, started with three classes and dropped one late in the semester. Continued to tell us he was doing well, didn’t need any help, yada, yada, yada – well, grades came out and he made F’s in both classes. When talking to him about this we find out: the lab class he dropped (and admitted he was flunking) – problem probably was he wasn’t attending class like he should – he had the teacher for another class and evidently she frequently dismissed that class by telling them that was “all for the day†or something to that effect. He took this to mean he didn’t need to go to his next class which was the lab since she was the teacher of that class and she had told them they were done for the day!! He also missed his mid-terms for the other two classes – we still don’t know why – and missed at least four days of classes (are not allowed to miss more than 3 days of classes at this school). He is now on academic probation and probably will sit this next semester out. Sigh. I really will have to slug it out with you at the front of the cure line… From: [mailto: ] On Behalf Of Roxanna Sent: June 08, 2010 08:59 AM Subject: Re: ( ) Cure That is a great point, . I wonder how the division line on this goes by age. And I would also bet the severity affects this kind of subject a lot. So many people are being dx'd with this these days and even self-dxing themselves. Anyone who is a bit quirky or can't make friends gets a dx of AS. This is a " severe " disability though. So I think people who deal with severe are the ones who would run out to stand in the cure line. And then as you pointed out, little kids and older kids are two different challenges entirely. Even people who think it's not so bad when their kid is 6 yo are singing a different tune after trying to navigate through puberty and watching their kid deal with social issues that are twenty times harder as they get older. Having seen both ends age wise and severity wise, maybe that's why I am first in the cure line. lol. Heck, I will even push someone else out of the way to get there. lol. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure I wouldn't cure my Daughter. In my eyes I still dont see Aspergers asAutism. And its prolly just my daughter. I would love to cure theoutburts but her quirks are what makes her unique. I love the way shesees the world, Yes she has challenges but who doesn't. I dontbelieve its silly to say I wouldn't cure my daughter. I think it variesto each persons own circumstance. I wouldn't cure her of thinkingdifferently?? On Jun 3, 2010, at 4:35 PM, Elgamal wrote: I somehow have lost the thread to this and was going torespond to Roxanna’s comment that if there was a cure for autism shewould go for it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. We all love our children and we all will say we lovethem as they are. But to say you wouldn’t want them cured of autismif that was possible is just as silly as saying you wouldn’t want yourchild cured if they had __________ (fill in the blank: diabetes, cancer,deafness, blindness, the list could go on and on). Many of us on thisgroup have kids who are older and we have spent years and years on therapies,support, medications, and continue to see our kids struggle. So, to sayyou wouldn’t want your child cured is silly (I am trying to be nice as Ican think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, thetroublemakers, the round pegs in the square holes... the ones who see thingsdifferently -- they're not fond of rules... You can quote them, disagree withthem, glorify or vilify them, but the only thing you can't do is ignore thembecause they change things... they push the human race forward, and while somemay see them as the crazy ones, we see genius, because the ones who are crazyenough to think that they can change the world, are the ones who do.†- Steve Jobs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 No, you are not alone Roxanna. I love to read your posts because you say exactly what I think/how I feel except I can’t say it as well as you do!! I agree autism and Aspergers do suck. I just want to cry sometimes – heck, I do cry sometimes – when I look at my loveable, smart, funny, good hearted, “doesn’t have a mean bone in him†(my husband/his step-dad’s words) and wonder when, oh when, are we ever going to get him to a state of full independence. I honestly don’t know if we will ever get there though I have to believe we will or I would just sit down and start crying and never stop. From: [mailto: ] On Behalf Of Roxanna Sent: June 08, 2010 03:55 PM Subject: Re: ( ) Cure Thank goodness I am not alone. I was reading posts, trying to catch up and I was ready to throw in the towel if I read another " I love having autism " posts, like they are all Temple Grandin's out there. I guess part of my stress is having to actually LIVE with autism and it isn't this great and wondrous thing. I sometimes wonder if I live on an alternate planet or we didn't get into the " We want the autism that is fun and exciting instead of the autism that really sucks life out of us " line when it was being passed out. that would just be my luck. lol What I want to know is why it's only the " good " traits of autism that get noted in these discussions. And I even say " good " traits with sarcasm attached because it's only " good " if you make it work for you. And if you can't, then the world is out to get you by not being " Accepting " of your " differences. " I mean, kids who can " stare at something for long periods of time " means these are the people who created computers and microwaves. huh? I don't get how one equals the other. it's just taking a negative trait and trying to make it seem like a positive trait. Nobody is out there cheering for the kid with autism who is obsessively spinning for long periods of time. Don't we love that ability to focus? And don't we credit those kids with creating something great? It takes both sides of the coin and people leave out the flip side. They credit autism/AS with the entire being of these kids/people as if that is the end and beginning of who they are. Without autism, they would be this lifeless hanging puppet or worse (gasp) normal like the rest of us. lol. Well, there are a lot of people out here who are relatively normal and quite interesting, inventive, able to focus for long periods of time, create wonderful life altering inventions, think...And peeling off the autism doesn't change who that person is unless you are crediting " who " someone is entirely to a disability called Autism. Then there is a the subset of this one - where people say, " Well, I would not want to cure autism because I love my kid just the way he is. I would like to take away his tantrums, his inability to make friends, his persevering, his ADHD..... " and on and on (fill in the blanks with your kid's autistic traits.) And to me, that's just saying the same thing - you'd cure autism. I don't ever hear people with other neurological issues creating a " I AM MY DISABILITY " club. I don't hear people saying, for instance, " Don't teach him to read. He is dyslexic. Dyslexic people are really smart and great thinkers. If you teach him to read, you'll take away who he is! If you teach him how to read, his imagination will disappear! It's wrong of the world not to accept him for who he is and wrong for them to force him to conform and learn to read! " OF course, I don't really hang out in any dyslexia groups online. Maybe this club exists too. In which case, AUGH! lol. I have 2 kids with dyslexia and 2 with autism. We did ABA with the younger one who has HFA and I credit that with helping him to BE high functioning. It's because we did not accept that autism would be who he was or define who he was and what he could do that he is where he is today. I don't give autism credit for any of his good features and it has only been something that has prevented him from achieving to his potential all this time and made everything four times harder than it is for a typical person/kid. So I hate it and I'd love to make it go away so he could take advantage of all the good qualities and abilities that he does have - HE has, not autism has. I do not yet understand why people want to credit a disability for the inner being of who someone is. I was cringing with all this talk about asking kids if they would take a pill to " fix " who they are. I will not even go there because I have such a headache right now. But that is so far from the point. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure Yes my son is only 10, but he has it hard already, still I would not want to cure him, and no I do not agree with the aforementioned comment about the comparison of Aspergers being close to cancer, or any other deadly problem. People DIE from cancer my son is alive and well, he has a rough road, no friends, but he is smart, he is inventive, he is loved and he is who he is. I work with the intellectually and physically disabled, I love them all for who they are, even the individuals who can turn on me and beat me to a pulp I love them, I understand them. I am so tired of people wanting a " fix " , god had a purpose to his design in each of us, he didn't make a mistake, and BTW do you like you computers, the cool software you have installed on them, how about your ,light bulbs, DVR's, cell phones and art and music? If we all fit in that box we wouldn't have any of that, if it were not for Aspergers you wouldn't have most of it. Have any of you listened to Temple Grandin? Her road was hard, and so was her mothers, but she likes who she is, and does not want to be cured. I ask my son, my 10 year old if I could give you a pill to make you " normal " would you want it, and he said, no mom, I want friends, but I want them to like me for who I am, I don't want them to like a fake me. I think that speaks volumes. If we are not accepting our kids for who they are, how can we ask the world to? I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 Oh, Roxanna – I thought of something I wanted to ask you. I know we have had this discussion before but tell me again the difference between Aspergers and HFA? Is it the delay in language that makes the designation HFA? From: [mailto: ] On Behalf Of Roxanna Sent: June 08, 2010 04:12 PM Subject: Re: ( ) Cure Well, if that is true then she is wrong. This is a group for parents whose kids have AS and HFA. (My two ds's have HFA and not AS) We are not an " AS only " group. Also, AS people are not guaranteed completely independent lives as adults at all either. If they were all going to do fine as adults, then I can see how one wouldn't be that worried and how one might think having AS was just a " different way of thinking. " However, that is not true at all. Also, autism is a spectrum disorder but that does not mean there is a menu of problems that only certain people have within the spectrum. Rather, it means they all have the same core problems with varying severity. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure Do people who can't even talk or communicate have aspergers? I think she is referring to aspergers only--as this is an aspergers group. Asperger children are even above high functioning autism on the spectrum. They are completely independent as adults and do not have the issues that other lower spectrum children have. So I think she is referring to Aspergers--not the children who can't communicate or participate. Purrs & Kisses, Kristal of Digi Kitty The Kitty who loves Digi! Designer for the VDBC " More " Team - you can see my designs HERE!!! I somehow have lost the thread to this and was going torespond to Roxanna’s comment that if there was a cure for autism shewould go for it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. We all love our children and we all will say we lovethem as they are. But to say you wouldn’t want them cured of autismif that was possible is just as silly as saying you wouldn’t want yourchild cured if they had __________ (fill in the blank: diabetes, cancer,deafness, blindness, the list could go on and on). Many of us on thisgroup have kids who are older and we have spent years and years on therapies,support, medications, and continue to see our kids struggle. So, to sayyou wouldn’t want your child cured is silly (I am trying to be nice as Ican think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, thetroublemakers, the round pegs in the square holes... the ones who see thingsdifferently -- they're not fond of rules... You can quote them, disagree withthem, glorify or vilify them, but the only thing you can't do is ignore thembecause they change things... they push the human race forward, and while somemay see them as the crazy ones, we see genius, because the ones who are crazyenough to think that they can change the world, are the ones who do.†- Steve Jobs “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 OMG. I ALMOST FELL OUT OF MY CHAIR LAUGHING AT THE LAST PART OF YOUR POST. I wish I could say it like you, sister! You Rock, Roxanna! "Over-optimism is waiting for you ship to come in when you haven't sent one out." From: Roxanna <MadIdeas@...> Sent: Tue, June 8, 2010 3:07:45 PMSubject: Re: ( ) Cure It is total BS that only people with autism invented everything in the world. It's nice your kid is high functioning enough that you can be glad he has a disability. But I promise there are a lot of people with more severe autism who are not able to speak up for themselves. Temple grandin makes a lot of money writing books, speaking and has a job doing what she loves. It's always nice to be someone who can do what they like, get paid a good wage and live independently. I hardly find that to be a barometer for whether having autism is a wonderful thing, though.It's nice if you can discuss "fake me's" and all that with your kid. I have a friend who has a kid who can't even use a communication device, let alone tell her how wonderful it is to wake up with poop his pants and have to be washed by other people. Well, I just assume he would say how great this autism stuff is if he could talk because everyone so far seems to think it's a wonderful disability to have. I'll ask him next time I see him how great it is to be autistic but I suspect he'll just be looking at the ground and stimming, oblivious to everything around him. last time, he actually said, "Hi!" to me (or towards me really) and I was impressed. I think he still has a way to go before he can form the words, "Having autism has made me what I am today." Hope he is working on that, though...maybe we can program it into his augmentative device? I'll ask his mom.RoxannaWhenever I feel blue, I start breathing again. Re: ( ) CureYes my son is only 10, but he has it hard already, still I would not want to cure him, and no I do not agree with the aforementioned comment about the comparison of Aspergers being close to cancer, or any other deadly problem. People DIE from cancer my son is alive and well, he has a rough road, no friends, but he is smart, he is inventive, he is loved and he is who he is. I work with the intellectually and physically disabled, I love them all for who they are, even the individuals who can turn on me and beat me to a pulp I love them, I understand them. I am so tired of people wanting a "fix", god had a purpose to his design in each of us, he didn't make a mistake, and BTW do you like you computers, the cool software you have installed on them, how about your ,light bulbs, DVR's, cell phones and art and music? If we all fit in that box we wouldn't have any of that, if it were not for Aspergers you wouldn't have most of it. Have any of you listened to Temple Grandin? Her road was hard, and so was her mothers, but she likes who she is, and does not want to be cured. I ask my son, my 10 year old if I could give you a pill to make you "normal" would you want it, and he said, no mom, I want friends, but I want them to like me for who I am, I don't want them to like a fake me. I think that speaks volumes. If we are not accepting our kids for who they are, how can we ask the world to? I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language). “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 I tend to see it your way, . Maybe their kids are so high functioning that it really is less of a disability and more of a " quirky kid " thing. Maybe then they don't see the need for a cure and maybe I wouldn't either if it were like that for us. I love my kids and they have their unique quirks too that are cute. But I don't consider that part of autism. It's just part of their individual personality. And the problems we deal with are not small. It seems more like we, as a family, are always in some state of stress. Nothing is ever simple. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure Yes my son is only 10, but he has it hard already, still I would not want to cure him, and no I do not agree with the aforementioned comment about the comparison of Aspergers being close to cancer, or any other deadly problem. People DIE from cancer my son is alive and well, he has a rough road, no friends, but he is smart, he is inventive, he is loved and he is who he is. I work with the intellectually and physically disabled, I love them all for who they are, even the individuals who can turn on me and beat me to a pulp I love them, I understand them. I am so tired of people wanting a " fix " , god had a purpose to his design in each of us, he didn't make a mistake, and BTW do you like you computers, the cool software you have installed on them, how about your ,light bulbs, DVR's, cell phones and art and music? If we all fit in that box we wouldn't have any of that, if it were not for Aspergers you wouldn't have most of it. Have any of you listened to Temple Grandin? Her road was hard, and so was her mothers, but she likes who she is, and does not want to be cured. I ask my son, my 10 year old if I could give you a pill to make you " normal " would you want it, and he said, no mom, I want friends, but I want them to like me for who I am, I don't want them to like a fake me. I think that speaks volumes. If we are not accepting our kids for who they are, how can we ask the world to?   I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language).        “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.â€Â  - Steve Jobs  “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.â€Â  - Steve Jobs -- -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 Wow, Rett is not a good dx to get. I hope that she does not have that! Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure ok I am a little late on this heated discussion but I thought I would throw my hat in the ring too. I would do anything to cure my daughter! My daughter seems perfect but she is not. She has trouble with eye contact and engages toys better than people. She also can not eat anything but purreed baby food. She walks drunk and needs a special med to help her talk. She is dx autism and my husband is an apsie. We are know working on getting her re--dx for RETT syndrome. If you do'nt know look it up. It is horrible. They can stop walking, talking, and eating by mouth! We are hoping she has atypical rett which means she may not regress. Her head has not grwon in almost 2 years and she has all the other signs of rett! I would do anything to save her. Even on her best days when she seems so " normal "  I still want her to be without sin in perfect. I wish this for all of us though. We are all sinned we all have a defect. It may be less noticeable in others but we struggle with challenges and the bottom line is we all die eventually. I dream of a life where there is no pain no sorrow and no tears forever for all of us! CAthy   I somehow have lost the thread to this and was going to respond to Roxanna’s comment that if there was a cure for autism she would go for it “in a heartbeat, half a heartbeatâ€. I totally agree with Roxanna. We all love our children and we all will say we love them as they are. But to say you wouldn’t want them cured of autism if that was possible is just as silly as saying you wouldn’t want your child cured if they had __________ (fill in the blank: diabetes, cancer, deafness, blindness, the list could go on and on). Many of us on this group have kids who are older and we have spent years and years on therapies, support, medications, and continue to see our kids struggle. So, to say you wouldn’t want your child cured is silly (I am trying to be nice as I can think of much more appropriate, though less politically correct, language).        “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.â€Â  - Steve Jobs  “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.â€Â  - Steve Jobs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 Yes the main diagnostic criteria differace is speech delay and both are spectrum so you can have a hfa who is higher functioning than an aspie or vice versa. However hfa is not an official dx, it is autism or not. Then from there there are many quirks that can vary between the 2 but at the same time, especially with high functioning type, there is a lot of crossover too. Ie when ppl finally started raising questions they all were thinking aspie and she has some aspie quirks. But this wasnt until she was 8 that the word was being mentioned, 3 yrs after she graduated from speech therapy so that part wasnt obvious but having had the delay she was dx hfa not aspie On 6/8/10, Elgamal <cindyelgamal@...> wrote: > Oh, Roxanna – I thought of something I wanted to ask you. I know we have > had this discussion before but tell me again the difference between > Aspergers and HFA? Is it the delay in language that makes the designation > HFA? > > > > > > > > From: > [mailto: ] On Behalf Of Roxanna > Sent: June 08, 2010 04:12 PM > > Subject: Re: ( ) Cure > > > > > > > Well, if that is true then she is wrong. This is a group for parents > whose kids have AS and HFA. (My two ds's have HFA and not AS) We are > not an " AS only " group. Also, AS people are not guaranteed completely > independent lives as adults at all either. If they were all going to > do fine as adults, then I can see how one wouldn't be that worried and > how one might think having AS was just a " different way of thinking. " > However, that is not true at all. > > Also, autism is a spectrum disorder but that does not mean there is a > menu of problems that only certain people have within the spectrum. > Rather, it means they all have the same core problems with varying > severity. > > Roxanna > Whenever I feel blue, I start breathing again. > > Re: ( ) Cure > > Do people who can't even talk or communicate have aspergers? I think > she is referring to aspergers only--as this is an aspergers group. > Asperger children are even above high functioning autism on the > spectrum. They are completely independent as adults and do not have the > issues that other lower spectrum children have. > So I think she is referring to Aspergers--not the children who can't > communicate or participate. > > Purrs & Kisses, > Kristal of Digi Kitty > The Kitty who loves Digi! > Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > > > > > > > > > I somehow have lost the thread to this and was going torespond to > Roxanna’s comment that if there was a cure for autism shewould go for > it “in a heartbeat, half a heartbeat”. I totallyagree with Roxanna. > We all love our children and we all will say we lovethem as they are. > But to say you wouldn’t want them cured of autismif that was possible > is just as silly as saying you wouldn’t want yourchild cured if they > had __________ (fill in the blank: diabetes, cancer,deafness, > blindness, the list could go on and on). Many of us on thisgroup have > kids who are older and we have spent years and years on > therapies,support, medications, and continue to see our kids struggle. > So, to sayyou wouldn’t want your child cured is silly (I am trying to > be nice as Ican think of much more appropriate, though less politically > correct, language). > > > > > > > > > > > > > > > “Here's to the crazy ones, the misfits, the rebels, thetroublemakers, > the round pegs in the square holes... the ones who see > thingsdifferently -- they're not fond of rules... You can quote them, > disagree withthem, glorify or vilify them, but the only thing you can't > do is ignore thembecause they change things... they push the human race > forward, and while somemay see them as the crazy ones, we see genius, > because the ones who are crazyenough to think that they can change the > world, are the ones who do.” - Steve Jobs > > > > “Here's to the crazy ones, the misfits, the rebels, the troublemakers, > the round pegs in the square holes... the ones who see things > differently -- they're not fond of rules... You can quote them, > disagree with them, glorify or vilify them, but the only thing you > can't do is ignore them because they change things... they push the > human race forward, and while some may see them as the crazy ones, we > see genius, because the ones who are crazy enough to think that they > can change the world, are the ones who do.” - Steve Jobs > > > > -- Sent from my mobile device -mommy to Emma, Becca, , , , and baby girl no name (yeah I know, nothing new, does ever pick a name in a timely manner?) July 2010 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 I'm not sure what you mean by " focusing on the bad " in regard to cure. It's just stating the facts of what is autism. Saying it in a nicer way might make you feel better. It doesn't bother me to say it is what it is. We definitely focus on what we can do with the situation we are given. But if we were given a chance to have a cure, we'd be fighting to the front of that line. lol. i don't think I get the connection where wanting a cure is focusing on the bad. As for people who have " way worse disabilities than this " , maybe you've not met people with autism? There are some who can't lift a spoon or change themselves or use the restroom. So I don't know if we are on the same page in the conversation. it's pretty bad stuff. And frankly, there will always be someone who has it worse no matter what condition you are talking about. I won't make decisions based on the fact that it could be worse or someone else has it worse. I don't agree with you regarding dyslexia either. You can call it having all the symptoms remediated if that sounds better but to me, it's the same thing. You should NOT learn to live with dyslexia. Especially with what we know about dyslexia today! 2 of our ds's have dyslexia - one is a compensated dyslexic and will never be " cured " . The other - we are kicking butt as we work on all related areas of delay. I am very positive and hopeful that he will no longer need special services in school to learn and will become an independent student. I think that's sad that you are afraid that a cure would cause more problems. I guess that is why I am not afraid of saying I want a cure for autism. I don't feel it will make anything worse at all. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure > > > > > > > > >Do people who can't even talk or communicate have aspergers? I think >she is referring to aspergers only--as this is an aspergers group. >Asperger children are even above high functioning autism on the >spectrum. They are completely independent as adults and do not have the >issues that other lower spectrum children have. >So I think she is referring to Aspergers--not the children who can't >communicate or participate. > > > > >Purrs & Kisses, >Kristal of Digi Kitty >The Kitty who loves Digi! >Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > > > > > > > > > > > > >I somehow have lost the thread to this and was going torespond to >Roxanna’s comment that if there was a cure for autism shewould go for >it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. >We all love our children and we all will say we lovethem as they are. >But to say you wouldn’t want them cured of autismif that was possible >is just as silly as saying you wouldn’t want yourchild cured if they >had __________ (fill in the blank: diabetes, cancer,deafness, >blindness, the list could go on and on). Many of us on thisgroup have >kids who are older and we have spent years and years on >therapies,support, medications, and continue to see our kids struggle. >So, to sayyou wouldn’t want your child cured is silly (I am trying to >be nice as Ican think of much more appropriate, though less politically >correct, language). > > > > > > > > > > > > > > >“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >the round pegs in the square holes... the ones who see >thingsdifferently -- they're not fond of rules... You can quote them, >disagree withthem, glorify or vilify them, but the only thing you can't >do is ignore thembecause they change things... they push the human race >forward, and while somemay see them as the crazy ones, we see genius, >because the ones who are crazyenough to think that they can change the >world, are the ones who do.â€Â  - Steve Jobs > > > >“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >the round pegs in the square holes... the ones who see things >differently -- they're not fond of rules... You can quote them, >disagree with them, glorify or vilify them, but the only thing you >can't do is ignore them because they change things... they push the >human race forward, and while some may see them as the crazy ones, we >see genius, because the ones who are crazy enough to think that they >can change the world, are the ones who do.â€Â  - Steve Jobs > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important things, or do many other things that a typical person of his age can do if they absolutely have to. He probably won't ever be able to drive because he processes events slowly and startles rather than reacting appropriately when something unexpected happens. He has earned two professional certificates, but is on the waiting list with the Department of Rehabilitative Services because he's sufficiently handicapped to qualify for job placement and job coaching services--without which he would be unable to get or retain a job. (He has no sense of business-appropriate behavior and doesn't self-edit the sort of comments that will get you fired, so he's going to need an employer who is *very* understanding.) Something like 70% of adults with AS are under or unemployed because of similar problems. He's never had a friend despite the fact that he would dearly love at least one. He probably won't ever marry and have a family of his own. We're *hoping* that, with appropriate supports, he'll eventually be able to leave home, but that's years and years in the future if ever. I'm also saddened by parents whose children have been diagnosed at 5 or 6 yo, who think that their child has "mild AS." If a person has mild AS--the kind that means they're going to be quirky adults and absent-minded professors--they're often not diagnosed until they're in junior high and their social deficits have become a problem. (I have another son who has AS who's in that category.) If AS is apparent at the age of 5 or 6, it's probably not going to be a "mild case." It's all about not keeping pace developmentally with chronological peers. None of the 5yos have great social skills, so a mild case isn't even apparent at that age. However, as typical children become more socially competent, kids with AS lag farther and farther behind. If you can already see that lag at a very early age it's a pretty good indication that you're not dealing with a mild case of AS. As far as the need for a cure goes, my feeling is that if, as an adult, you have AS and you can take care of yourself, you probably don't need a cure--although you might want one anyway because it would simplify life a great deal. If you don't need friends or a family of your own, then you're not going to be bothered by their absence and you probably don't need a cure. If, however, you want a family, your spouse is going to have to do the heavy lifting in the relationship if it's going to succeed. My husband has AS, so I have some experience with this. If you have AS, and it means you can't hold a job and have to depend on your family, social services, or the kindness of strangers as an adult rather than taking care of yourself, then you're being selfish and deluding yourself if you think you're simply "different."SueRe: CurePosted by: "Roxanna" MadIdeas@... roxannaneelyTue Jun 8, 2010 2:12 pm (PDT)Well, if that is true then she is wrong. This is a group for parents whose kids have AS and HFA. (My two ds's have HFA and not AS) We are not an "AS only" group. Also, AS people are not guaranteed completely independent lives as adults at all either. If they were all going to do fine as adults, then I can see how one wouldn't be that worried and how one might think having AS was just a "different way of thinking." However, that is not true at all.Also, autism is a spectrum disorder but that does not mean there is a menu of problems that only certain people have within the spectrum. Rather, it means they all have the same core problems with varying severity.RoxannaWhenever I feel blue, I start breathing again. Re: ( ) CureDo people who can't even talk or communicate have aspergers? I think she is referring to aspergers only--as this is an aspergers group. Asperger children are even above high functioning autism on the spectrum. They are completely independent as adults and do not have the issues that other lower spectrum children have.So I think she is referring to Aspergers--not the children who can't communicate or participate.Purrs & Kisses,Kristal of Digi KittyThe Kitty who loves Digi!Designer for the VDBC "More" Team - you can see my designs HERE!!!   Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 Well said, good points, Sue! > > My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 You gave a very good description of the range of issues AS kids face. Pam > > My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important things, or do many other things that a typical person of his age can do if they absolutely have to. He probably won't ever be able to drive because he processes events slowly and startles rather than reacting appropriately when something unexpected happens. He has earned two professional certificates, but is on the waiting list with the Department of Rehabilitative Services because he's sufficiently handicapped to qualify for job placement and job coaching services--without which he would be unable to get or retain a job. (He has no sense of business-appropriate behavior and doesn't self-edit the sort of comments that will get you fired, so he's going to need an employer who is *very* understanding.) Something like 70% of adults with AS are under or unemployed because of similar problems. He's never had a friend despite the fact that he would dearly love at least one. He probably won't ever marry and have a family of his own. We're *hoping* that, with appropriate supports, he'll eventually be able to leave home, but that's years and years in the future if ever. > > I'm also saddened by parents whose children have been diagnosed at 5 or 6 yo, who think that their child has " mild AS. " If a person has mild AS--the kind that means they're going to be quirky adults and absent-minded professors--they're often not diagnosed until they're in junior high and their social deficits have become a problem. (I have another son who has AS who's in that category.) If AS is apparent at the age of 5 or 6, it's probably not going to be a " mild case. " It's all about not keeping pace developmentally with chronological peers. None of the 5yos have great social skills, so a mild case isn't even apparent at that age. However, as typical children become more socially competent, kids with AS lag farther and farther behind. If you can already see that lag at a very early age it's a pretty good indication that you're not dealing with a mild case of AS. > > As far as the need for a cure goes, my feeling is that if, as an adult, you have AS and you can take care of yourself, you probably don't need a cure--although you might want one anyway because it would simplify life a great deal. If you don't need friends or a family of your own, then you're not going to be bothered by their absence and you probably don't need a cure. If, however, you want a family, your spouse is going to have to do the heavy lifting in the relationship if it's going to succeed. My husband has AS, so I have some experience with this. If you have AS, and it means you can't hold a job and have to depend on your family, social services, or the kindness of strangers as an adult rather than taking care of yourself, then you're being selfish and deluding yourself if you think you're simply " different. " > > Sue > > > Re: Cure > > Posted by: " Roxanna " MadIdeas@... roxannaneely > > Tue Jun 8, 2010 2:12 pm (PDT) > > > > > > > > > > Well, if that is true then she is wrong. This is a group for parents > > whose kids have AS and HFA. (My two ds's have HFA and not AS) We are > > not an " AS only " group. Also, AS people are not guaranteed completely > > independent lives as adults at all either. If they were all going to > > do fine as adults, then I can see how one wouldn't be that worried and > > how one might think having AS was just a " different way of thinking. " > > However, that is not true at all. > > > > Also, autism is a spectrum disorder but that does not mean there is a > > menu of problems that only certain people have within the spectrum. > > Rather, it means they all have the same core problems with varying > > severity. > > > > Roxanna > > Whenever I feel blue, I start breathing again. > > > > Re: ( ) Cure > > > > Do people who can't even talk or communicate have aspergers? I think > > she is referring to aspergers only--as this is an aspergers group. > > Asperger children are even above high functioning autism on the > > spectrum. They are completely independent as adults and do not have the > > issues that other lower spectrum children have. > > So I think she is referring to Aspergers--not the children who can't > > communicate or participate. > > > > Purrs & Kisses, > > Kristal of Digi Kitty > > The Kitty who loves Digi! > > Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > Â > > Â > > Â > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 All this talk about cure. I have only been following casually the messages posted. But, all I can think when I see all these messages is that I do want a cure. This is a debilitating problem. Can we just cure the negatives and keep the positives? I'm all for that! ( ) Re: Cure Well said, good points, Sue! >> My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 This i can agree with! I wish it were that simple! I watch my poor adhd mediation alter so much me what i love about him, i hate giving him that pill! Debra Balke <dlbalke@...> wrote: >All this talk about cure. I have only been following casually the messages posted. But, all I can think when I see all these messages is that I do want a cure. This is a debilitating problem. Can we just cure the negatives and keep the positives? I'm all for that! > ( ) Re: Cure > > > > Well said, good points, Sue! > > > > > > > > My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 I worry exactly the same for my son with major issues and he's only 7. I am milder than he is in presentation, but still had/have major difficulties in my life. I think the bad outweighs the good. Miranda > > My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important things, or do many other things that a typical person of his age can do if they absolutely have to. He probably won't ever be able to drive because he processes events slowly and startles rather than reacting appropriately when something unexpected happens. He has earned two professional certificates, but is on the waiting list with the Department of Rehabilitative Services because he's sufficiently handicapped to qualify for job placement and job coaching services--without which he would be unable to get or retain a job. (He has no sense of business-appropriate behavior and doesn't self-edit the sort of comments that will get you fired, so he's going to need an employer who is *very* understanding.) Something like 70% of adults with AS are under or unemployed because of similar problems. He's never had a friend despite the fact that he would dearly love at least one. He probably won't ever marry and have a family of his own. We're *hoping* that, with appropriate supports, he'll eventually be able to leave home, but that's years and years in the future if ever. > > I'm also saddened by parents whose children have been diagnosed at 5 or 6 yo, who think that their child has " mild AS. " If a person has mild AS--the kind that means they're going to be quirky adults and absent-minded professors--they're often not diagnosed until they're in junior high and their social deficits have become a problem. (I have another son who has AS who's in that category.) If AS is apparent at the age of 5 or 6, it's probably not going to be a " mild case. " It's all about not keeping pace developmentally with chronological peers. None of the 5yos have great social skills, so a mild case isn't even apparent at that age. However, as typical children become more socially competent, kids with AS lag farther and farther behind. If you can already see that lag at a very early age it's a pretty good indication that you're not dealing with a mild case of AS. > > As far as the need for a cure goes, my feeling is that if, as an adult, you have AS and you can take care of yourself, you probably don't need a cure--although you might want one anyway because it would simplify life a great deal. If you don't need friends or a family of your own, then you're not going to be bothered by their absence and you probably don't need a cure. If, however, you want a family, your spouse is going to have to do the heavy lifting in the relationship if it's going to succeed. My husband has AS, so I have some experience with this. If you have AS, and it means you can't hold a job and have to depend on your family, social services, or the kindness of strangers as an adult rather than taking care of yourself, then you're being selfish and deluding yourself if you think you're simply " different. " > > Sue > > > Re: Cure > > Posted by: " Roxanna " MadIdeas@... roxannaneely > > Tue Jun 8, 2010 2:12 pm (PDT) > > > > > > > > > > Well, if that is true then she is wrong. This is a group for parents > > whose kids have AS and HFA. (My two ds's have HFA and not AS) We are > > not an " AS only " group. Also, AS people are not guaranteed completely > > independent lives as adults at all either. If they were all going to > > do fine as adults, then I can see how one wouldn't be that worried and > > how one might think having AS was just a " different way of thinking. " > > However, that is not true at all. > > > > Also, autism is a spectrum disorder but that does not mean there is a > > menu of problems that only certain people have within the spectrum. > > Rather, it means they all have the same core problems with varying > > severity. > > > > Roxanna > > Whenever I feel blue, I start breathing again. > > > > Re: ( ) Cure > > > > Do people who can't even talk or communicate have aspergers? I think > > she is referring to aspergers only--as this is an aspergers group. > > Asperger children are even above high functioning autism on the > > spectrum. They are completely independent as adults and do not have the > > issues that other lower spectrum children have. > > So I think she is referring to Aspergers--not the children who can't > > communicate or participate. > > > > Purrs & Kisses, > > Kristal of Digi Kitty > > The Kitty who loves Digi! > > Designer for the VDBC " More " Team - you can see my designs HERE!!! > > > > Â > > Â > > Â > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 In regards to your comment once again stress aspergers, not low to to on function Autism. I hate said this more than once, i work with many Autism clients. Just like my poor adhd his mediation does not equal cure, its a came aid, which i hate, and he schools were more willing to do their jobs i wouldn't give it to him. Like i said my opinion you all have the right to feel however you want, i just got personally attacked for my view, that's why i went on the offense. Roxanna, you were reading back and a couple me up were told we or our ideas are silly, it ridiculous that those me up do not agree with a few me you get laughed at for our opinions, he this is the kind of close mined group i am apart of i want none it! Roxanna <MadIdeas@...> wrote: > >I'm not sure what you mean by " focusing on the bad " in regard to cure. >It's just stating the facts of what is autism. Saying it in a nicer >way might make you feel better. It doesn't bother me to say it is what >it is. We definitely focus on what we can do with the situation we are >given. But if we were given a chance to have a cure, we'd be fighting > to the front of that line. lol. i don't think I get the >connection where wanting a cure is focusing on the bad. As for people >who have " way worse disabilities than this " , maybe you've not met >people with autism? There are some who can't lift a spoon or change >themselves or use the restroom. So I don't know if we are on the same >page in the conversation. it's pretty bad stuff. And frankly, there >will always be someone who has it worse no matter what condition you >are talking about. I won't make decisions based on the fact that it >could be worse or someone else has it worse. > >I don't agree with you regarding dyslexia either. You can call it >having all the symptoms remediated if that sounds better but to me, >it's the same thing. You should NOT learn to live with dyslexia. >Especially with what we know about dyslexia today! 2 of our ds's have >dyslexia - one is a compensated dyslexic and will never be " cured " . >The other - we are kicking butt as we work on all related areas of >delay. I am very positive and hopeful that he will no longer need >special services in school to learn and will become an independent >student. > >I think that's sad that you are afraid that a cure would cause more >problems. I guess that is why I am not afraid of saying I want a cure >for autism. I don't feel it will make anything worse at all. > >Roxanna >Whenever I feel blue, I start breathing again. > > > Re: ( ) Cure >> >> >> >> >> >> >> >> >>Do people who can't even talk or communicate have aspergers? I think >>she is referring to aspergers only--as this is an aspergers group. >>Asperger children are even above high functioning autism on the >>spectrum. They are completely independent as adults and do not have >the >>issues that other lower spectrum children have. >>So I think she is referring to Aspergers--not the children who can't >>communicate or participate. >> >> >> >> >>Purrs & Kisses, >>Kristal of Digi Kitty >>The Kitty who loves Digi! >>Designer for the VDBC " More " Team - you can see my designs HERE!!! >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>I somehow have lost the thread to this and was going torespond to >>Roxanna’s comment that if there was a cure for autism shewould go for >>it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. >>We all love our children and we all will say we lovethem as they are. >>But to say you wouldn’t want them cured of autismif that was possible >>is just as silly as saying you wouldn’t want yourchild cured if they >>had __________ (fill in the blank: diabetes, cancer,deafness, >>blindness, the list could go on and on). Many of us on thisgroup have >>kids who are older and we have spent years and years on >>therapies,support, medications, and continue to see our kids struggle. >>So, to sayyou wouldn’t want your child cured is silly (I am trying to >>be nice as Ican think of much more appropriate, though less politically >>correct, language). >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, thetroublemakers, >>the round pegs in the square holes... the ones who see >>thingsdifferently -- they're not fond of rules... You can quote them, >>disagree withthem, glorify or vilify them, but the only thing you can't >>do is ignore thembecause they change things... they push the human race >>forward, and while somemay see them as the crazy ones, we see genius, >>because the ones who are crazyenough to think that they can change the >>world, are the ones who do.â€Â  - Steve Jobs >> >> >> >>“Here's to the crazy ones, the misfits, the rebels, the troublemakers, >>the round pegs in the square holes... the ones who see things >>differently -- they're not fond of rules... You can quote them, >>disagree with them, glorify or vilify them, but the only thing you >>can't do is ignore them because they change things... they push the >>human race forward, and while some may see them as the crazy ones, we >>see genius, because the ones who are crazy enough to think that they >>can change the world, are the ones who do.â€Â  - Steve Jobs >> >> >> >> >> >> >> >> >> >> >> > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 Mostly that is the big difference - the language delay. These kids are dx'd with autism and somehow, their development takes a good turn at some point, language comes together and they end up functioning as well as many kids with AS. It's not a real dx label but I think it should be because we sort of hang in between two worlds otherwise. My ds's were dx'd with autism by age 3, did not speak and socialize, did not play, had the whole autistic list of issues. But at some point along the way, things clicked into gear for each of them and their language came in, albeit for both, it is not great. It's good. And now we have the same kinds of problems as parents whose kids have AS have to deal with with language - mostly social skills/pragmatic issues. We used to think (other parents on the list and me when discussing this) that it also was apparent in the kinds of test scores our kids got. For instance, kids with AS often get high scores in language skills (verbal) vs. lower scores in performance scores. My ds's both would score high in performance but low in language based scores. I read someone somewhere say that was not an accurate way to differentiate. But really, I thought it helped explain a lot of the differences. And the kids I have worked with locally as an advocate have always fit that profile. I once read an article on Tony Attwood's site about a study done to examine the trajectory of this - how some kids with autism will suddenly make a turn in development and catch up to the kids who have AS and thereafter, they will tend to follow a similar trajectory in development. I should find that again and post it in the files section. But I don't know if he still has it there or not. I think mostly what it means to me is two things: First, I empathize a lot more with the " autism " side of these kinds of discussions because I never knew my kids would end up being high functioning in the beginning. I did not have the same experience as many of the AS parents here where their child develops fairly typically but there is something " quirky " going on and they are not sure what. We knew something major was wrong in the beginning. And second, I have had to often advocate for teachers to understand that their language skills were delayed because they were often put in groups or thought of as having AS just because they are high functioning and not a typically " lost in their own world " person with autism. Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure Do people who can't even talk or communicate have aspergers? I think she is referring to aspergers only--as this is an aspergers group. Asperger children are even above high functioning autism on the spectrum. They are completely independent as adults and do not have the issues that other lower spectrum children have. So I think she is referring to Aspergers--not the children who can't communicate or participate. Purrs & Kisses, Kristal of Digi Kitty The Kitty who loves Digi! Designer for the VDBC " More " Team - you can see my designs HERE!!!      I somehow have lost the thread to this and was going torespond to Roxanna’s comment that if there was a cure for autism shewould go for it “in a heartbeat, half a heartbeatâ€. I totallyagree with Roxanna. We all love our children and we all will say we lovethem as they are. But to say you wouldn’t want them cured of autismif that was possible is just as silly as saying you wouldn’t want yourchild cured if they had __________ (fill in the blank: diabetes, cancer,deafness, blindness, the list could go on and on). Many of us on thisgroup have kids who are older and we have spent years and years on therapies,support, medications, and continue to see our kids struggle. So, to sayyou wouldn’t want your child cured is silly (I am trying to be nice as Ican think of much more appropriate, though less politically correct, language).        “Here's to the crazy ones, the misfits, the rebels, thetroublemakers, the round pegs in the square holes... the ones who see thingsdifferently -- they're not fond of rules... You can quote them, disagree withthem, glorify or vilify them, but the only thing you can't do is ignore thembecause they change things... they push the human race forward, and while somemay see them as the crazy ones, we see genius, because the ones who are crazyenough to think that they can change the world, are the ones who do.â€Â  - Steve Jobs  “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.â€Â  - Steve Jobs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 Sue, That was so correct!!! I've watched several young HFA adults who do have jobs (with a job coach) and you described them to a T. Some work in fast food places washing dishes & pots, cleaning the tables & bathrooms and mopping the floors. this one guy - He can drive but he can't answer the phone and take an order. Even thou he wants to so bad and he tries but messes up every order. his boss and job coach both told him he can't never answer the phone. how sad he was. he see's others can do it without any problems and gets the order right. Even helps the customers with their own order. this young man can't. he doesn't know how to approach his boss for another position in his job nor does he know how to apply for a different job. so he stays there doing the job he learned. he can only do one assignment at a time. he knows what he learned and that's it - he's comfortable. He lives with both parents. When he was younger his parents thought things would be so much better for him when he's an adult. he also has a high IQ and he can drive. how hard can a job be..... They never expected this for their son. another young man can't drive nor does he want to. he lives in a group home because he can't pay bills and needs reminders to do laundry, wash himself and getting to his job and home. He can't understand how to take the bus & put the correct money in. He doesn't pay attention to his stop. He can't ride the bus... He needs to do the same routine every day and if its changed he needs one on one help with his job coach. all of these young men (except this last one) want more. They see how simple others can do their job without any help and know just what to do. They are HFA yet put in the same group as others that have more needs than them. When the job coach comes in with the boss to check on them they are all in that same group and the HFA's know the difference between their group and the other typical workers. they know the typical workers don't have a job coach and are expected to do more. they know they are different and know enough to want to be like their typical co-workers. The autism is holding them back. You describe these young adults to the T. I have to tell you, their are these two young adults that live in a group home. Both can't drive or hold a job. they are married. They do their laundry together in a laundry matt. The person that runs the group home drives the group to the laundry matt and shopping. this couple needs help with the shopping but they can do their laundry on their own with a few concerns. When they put a $20.00 bill in the coin machine. They only took a few quarters to put into the washing machine and left the rest of the change in the coin machine. (I didn't know this at that time) When the next person came in she put her money in the coin machine not knowing their change was still in there. (neither did I) that caused a problem and this couple didn't know how to handle it. (It wasn't until then that I realized what happened). because the couple yelled - that's my money!!! They tried to explain but the lady only understood when she saw all that change...At First, that lady was arguing that she just put $5.00 in the machine. That's my money she said - get away!!!!! it was a good thing that woman just counted out her $5.00 in change and gave the rest back to that couple. How difficult was that! I agree, without the autism life would be that much different for them. you explained your post so well and I know these job coaches would agree. Best luck to you and your son Rose From: Comtois <suetois@...> Sent: Tue, June 8, 2010 8:03:37 PMSubject: ( ) Re: Cure My almost 19yo son has AS. He's never had any sort of verbal delay, and he has a *very* high IQ. But he's not going to be leading an independent life as an adult for a long time--if ever. He needs to be our ward (and is happy to be so) because he can't handle major decisions for himself. He can't find a doctor or an apartment, navigate college, be responsible for remembering to do important things, or do many other things that a typical person of his age can do if they absolutely have to. He probably won't ever be able to drive because he processes events slowly and startles rather than reacting appropriately when something unexpected happens. He has earned two professional certificates, but is on the waiting list with the Department of Rehabilitative Services because he's sufficiently handicapped to qualify for job placement and job coaching services--without which he would be unable to get or retain a job. (He has no sense of business-appropriat e behavior and doesn't self-edit the sort of comments that will get you fired, so he's going to need an employer who is *very* understanding. ) Something like 70% of adults with AS are under or unemployed because of similar problems. He's never had a friend despite the fact that he would dearly love at least one. He probably won't ever marry and have a family of his own. We're *hoping* that, with appropriate supports, he'll eventually be able to leave home, but that's years and years in the future if ever. I'm also saddened by parents whose children have been diagnosed at 5 or 6 yo, who think that their child has "mild AS." If a person has mild AS--the kind that means they're going to be quirky adults and absent-minded professors-- they're often not diagnosed until they're in junior high and their social deficits have become a problem. (I have another son who has AS who's in that category.) If AS is apparent at the age of 5 or 6, it's probably not going to be a "mild case." It's all about not keeping pace developmentally with chronological peers. None of the 5yos have great social skills, so a mild case isn't even apparent at that age. However, as typical children become more socially competent, kids with AS lag farther and farther behind. If you can already see that lag at a very early age it's a pretty good indication that you're not dealing with a mild case of AS. As far as the need for a cure goes, my feeling is that if, as an adult, you have AS and you can take care of yourself, you probably don't need a cure--although you might want one anyway because it would simplify life a great deal. If you don't need friends or a family of your own, then you're not going to be bothered by their absence and you probably don't need a cure. If, however, you want a family, your spouse is going to have to do the heavy lifting in the relationship if it's going to succeed. My husband has AS, so I have some experience with this. If you have AS, and it means you can't hold a job and have to depend on your family, social services, or the kindness of strangers as an adult rather than taking care of yourself, then you're being selfish and deluding yourself if you think you're simply "different." Sue Re: Cure Posted by: "Roxanna" MadIdeasaol (DOT) com roxannaneely Tue Jun 8, 2010 2:12 pm (PDT) Well, if that is true then she is wrong. This is a group for parents whose kids have AS and HFA. (My two ds's have HFA and not AS) We are not an "AS only" group. Also, AS people are not guaranteed completely independent lives as adults at all either. If they were all going to do fine as adults, then I can see how one wouldn't be that worried and how one might think having AS was just a "different way of thinking." However, that is not true at all.Also, autism is a spectrum disorder but that does not mean there is a menu of problems that only certain people have within the spectrum. Rather, it means they all have the same core problems with varying severity.RoxannaWhenever I feel blue, I start breathing again. Re: ( ) CureDo people who can't even talk or communicate have aspergers? I think she is referring to aspergers only--as this is an aspergers group. Asperger children are even above high functioning autism on the spectrum. They are completely independent as adults and do not have the issues that other lower spectrum children have.So I think she is referring to Aspergers--not the children who can't communicate or participate.Purrs & Kisses,Kristal of Digi KittyThe Kitty who loves Digi!Designer for the VDBC "More" Team - you can see my designs HERE!!!   Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 8, 2010 Great post, Sue! I like how you explained the " mild AS " part as well. i have always noted how many people say that their kid has " mild AS " and I venture that almost 90% of people who come to this group say that very thing which I find really curious! I have often thought people say that their kid is " mild " AS because they think of AS as being mild in relation to autism? But I don't know if that's a good explanation as they seem to think it's mild in relation all people with AS. Anyway, your point is well taken and I agree. It also goes with what was said earlier about people whose kids are younger vs. people who have teens or young adult kids with AS/HFA and how we view having AS differently. It would be interesting to track the changes in parent perception along the way as well. That would make an interesting study! Roxanna Whenever I feel blue, I start breathing again. Re: ( ) Cure Do people who can't even talk or communicate have aspergers? I think she is referring to aspergers only--as this is an aspergers group. Asperger children are even above high functioning autism on the spectrum. They are completely independent as adults and do not have the issues that other lower spectrum children have. So I think she is referring to Aspergers--not the children who can't communicate or participate. Purrs & Kisses, Kristal of Digi Kitty The Kitty who loves Digi! Designer for the VDBC " More " Team - you can see my designs HERE!!!    Quote Share this post Link to post Share on other sites
