Guest guest Report post Posted June 8, 2010 The posts lately have been very helpful to me. My son was only diagnosed about 2 or 3 months ago. I don't know how I missed it. My degree is in psychology, but I graduated 25 years ago. My son was abused in a daycare as a toddler. We always assumed everything that was "quirky" came from the daycare situation. Ds is 14 now and has had only one really good friend through the years. That child left his school when he was about 8, and he has obsessed over him ever since. He started a new school this past year and was bullied so bad that he started having panic attacks. We are going to homeschool this coming year. There were so many things that made sense after I read about Asbergers. He only eats a few things, and school was hard because he got nauseated from the smells in the lunchroom. When we first read the symtoms of AS, my husband said it was like reading our son's biography. I grieve so much for what he misses by not being able to socialize. He tries so hard to fit in and he just doesn't. He is so advanced in some of his interests and yet he has to go to the toy aisle in walmart everytime we go. He gets upset when I won't buy action figures or transformers or bionicles. His interests are right in line with the 2nd grader he plays with at church. I'm more venting than anything. I would do anything if I could take the hurt away from him. He knows he's different. He has also been diagnosed OCD, ADHD, and Bipolar. He is on medication for these. I get confused when I realize that the psychiatrist and the ped doc misses this. So many things would have been easier to understand. Maybe we wouldn't have spent hours trying to teach him to tie his shoes. Now we just buy sketchers velcro and go on...Anyway. Sorry so long. Your posts have really helped me!Thanks,Deana in Bham, ALSent on the Sprint® Now Network from my BlackBerry®From: Roxanna <MadIdeas@...>Date: Tue, 08 Jun 2010 23:22:38 -0400< >Subject: Re: ( ) Re: Cure 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!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 Sue – Great post. My son wasn’t diagnosed until he was 15 – diagnosed at age 5 with ADHD though I often thought that there was something more going on than just the ADHD. I attributed the late diagnosis to not enough awareness about Aspergers – it wasn’t an accepted diagnosis in the U.S. until 1994. My son does drive and is a very good driver but struggles with many of the things you mention. His dad is in the process of getting legal guardianship as he is not ready to make any major decisions and we worry about others taking advantage of him. We do hope that this is not permanent and we can reverse it at some point but this may never happen. I am also involved with a group of parents with Aspie kids – we are looking at appropriate housing options for our adult kids. Again, I am hopeful that by the time this becomes a reality my son won’t need this – but still realistic enough to know that he may need to live in some sort of housing that offers supports. From: [mailto: ] On Behalf Of Comtois Sent: June 08, 2010 08:04 PM Subject: ( ) 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-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 9, 2010 I also want to thank you for your post, Sue. My 8 year old daughter was just diagnosed with AS in late April, and last week my mom and I went for the meeting with her neuropsychologist that went over all of the test results. Natalee's IQ is only 81. We have known her whole life that something was different, and the "lag" became QUITE apparent this last year, enough for even her doctors to finally notice. Her biggest problems right now is anxiety, OCD, communicating effectively. the social problems, and any kind of problem solving. Her meltdowns are all internalized, resulting in migraines and pain all over her body. I, too, feel like if AS is apparent with all of these kinds of dibilitating symtoms at an early age, then it is not "mild". Natalee's neurologist was very frank with us and "broke the news" to us that although we should never limit Natalee or not have great hopes for her, she will probably never be able to live on her own. We should have a vocational eval when she is in her late teens to help her POSSIBLY hold down a job, that some college courses may be possible, but that if we don't want to take care of her as an adult, that we need to go ahead and get started on waiting lists for group homes and assissted living facilities. I am so thankful to be able to say that we do not have to go that route. We have a big family, and everyone LOVES and completely accepts Natalee the way she is, even before we had the diagnosis. My nephew (who is 10 years older than Natalee and her favorite person in the whole world) has already stepped up to the plate and has promised to help her in any way, even when she is an adult. She has so many positive social opportunities just in our family, at church, with our friends who love her, and in our homeschool group, and so many of these people are already offering help to make sure that her life as an adult will be as full as possible. We are so blessed, and I felt so blessed that her doctor was so upfront with us at the meeting. 1:2-4 "Consider it pure joy my brothers whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance, and perseverance must finish its works so that you may be whole and complete, not lacking anything." Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 9, 2010 I agree with everything you said in this post but I have to say you put me to tears as I have a six year old aspie and I could tell at age three even though we didn't get a diagnosis until he turned six. I am really hoping for an absent minded professor. Lots of social skills training ahead of us I guess. Thankyou for your post and insight even if it was a little depressing. > > 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 9, 2010 For me, using " mild " regarding my son (21) is because I haven't had to deal with many of the issues so many other parents have with their children. No behavior issues ever, he doesn't need a really structured day, wasn't real rigid about things, and so on. He did great in public school, regular/gifted classrooms, and work/grades, behavior...and rarely did his HFA/Aspergers cause a problem regarding school work (just a couple times or so). We had a 504 Plan for him because of his OCD (severe) in middle school, but really never needed to address the Aspergers side all thru school. He's away at college now. So I feel like I've had it pretty " easy " in comparison to the severity of traits/issues that others deal with daily. Sue's post really hit home, so many similarities in what I'm concerned about. Don't know how well I explained this, but I do say " mild " when describing him. While at the same time, worrying about his future on his own! > > 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
Guest guest Report post Posted June 9, 2010 things sound quite positive for your son. I would say he has mild AS too--just like my husband. My dh has a Ph.D., a satisfying job, a successful marriage, five kids, and an abiding interest in Willow from Buffy the Vampire Slayer. It's been off the air for years now, but he still spends at least a couple of hours a day watching it and playing with screen captures from it. He's not very emotionally available. He gets pretty irked if his routines are upset. A lot of those things would be stoppers for a lot of wives, but not for me. I think his quirks are generally endearing, and I've come to understand that some of the things I wish he could give me just aren't something he can provide, and I've come to be OK with that. Things can all fall in place if someone with AS finds the right niche in life. It sounds like your son has a very good chance of finding his niche. Sue > > > > 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
Guest guest Report post Posted June 9, 2010 Hugs. I'm *really* sorry that I've discouraged you. :-( I didn't mean to do that. I think early intervention makes a huge difference for the final outcome with these kids. I wish I had known what was wrong with my sons when they were very young, so they could have benefitted from intervention the way your son may. One of the few disadvantages of AS compared to classical autism is that it often *doesn't* become diagnosable until children are already past that early intervention window. I would like to see some way to identify kids with AS when they're toddlers too, because I suspect that we might find the same degree of improvement in outcomes if we could only know to start working on the problems sooner. 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 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 9, 2010 If it makes you feel better, I think my son will be independent one day. I think he'll get married and have kids, too. He'll turn 14 next month but when he was six, I was not so convinced. Just natural maturity may help your son to some degree, but yes, there will be lots of social skills training in your future! That's okay though. At least you feel like you're doing something to help. My biggest suggestion/tip is to not give up and decide something isn't working if you don't see immediate improvement. Like so many things with my son, he seems to be listening and digesting things when I think there's no way he's learning anything. Then, 2 weeks/3 months/next year, he shows he was learning and can now apply what he learned to some degree. It seems like a processing delay, to some degree. So don't give up if you don't see an immediate benefit. "Over-optimism is waiting for you ship to come in when you haven't sent one out." From: jm.smoldt <jm.smoldt@...> Sent: Wed, June 9, 2010 9:59:05 AMSubject: ( ) Re: Cure I agree with everything you said in this post but I have to say you put me to tears as I have a six year old aspie and I could tell at age three even though we didn't get a diagnosis until he turned six. I am really hoping for an absent minded professor. Lots of social skills training ahead of us I guess. Thankyou for your post and insight even if it was a little depressing. >> 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 9, 2010 Thank you Sue! As to future wife - well, he's 21, not a date yet. Don't think he's even tried asking anyone from what he recently said. He apparently hasn't found THE special one to ask, said something like it's not fair to ask one out. There is more than one, at a time, he sort of likes but no one he *really* likes, something like that, so it wouldn't be fair. SIGH! Glad your marriage has worked so well, realizing that it's your understanding and acceptance (and love!) that works. Thanks for cheering me up! > > things sound quite positive for your son. I would say he has mild AS too--just like my husband. My dh has a Ph.D., a satisfying job, a successful marriage, five kids, and an abiding interest in Willow from Buffy the Vampire Slayer. It's been off the air for years now, but he still spends at least a couple of hours a day watching it and playing with screen captures from it. He's not very emotionally available. He gets pretty irked if his routines are upset. A lot of those things would be stoppers for a lot of wives, but not for me. I think his quirks are generally endearing, and I've come to understand that some of the things I wish he could give me just aren't something he can provide, and I've come to be OK with that. Things can all fall in place if someone with AS finds the right niche in life. It sounds like your son has a very good chance of finding his niche. > > Sue > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 9, 2010 I'd recommend to anyone who is suspicious their child has AS but can't get a diagnosis to focus on the behaviors, not the diagnosis. We were given an ADHD diagnosis when D was almost 5 but I didn't think that was really what we were dealing with. Regardless, we started meds and behavioral counseling immediately. I would never give my child a med without a corresponding behavioral intervention of some sort. We saw a psychologist for one hour, weekly, for about 3 years. My son would be the focus for 30 minutes and then I would work with her one on one for my own parenting and emotional support for 20 minutes. I can't say enough how helpful this help was! If you know something is wrong, get help for the problematic behavior. My son wasn't diagnosed with Aspergers until he was 11. If we had waited until then to get him help, he'd probably be in a very different place right now. Early intervention definitely helps.Sent via BlackBerry by AT&TFrom: "suetois" <suetois@...>Date: Wed, 09 Jun 2010 15:40:48 -0000< >Subject: ( ) Re: Cure Hugs. I'm *really* sorry that I've discouraged you. :-( I didn't mean to do that. I think early intervention makes a huge difference for the final outcome with these kids. I wish I had known what was wrong with my sons when they were very young, so they could have benefitted from intervention the way your son may. One of the few disadvantages of AS compared to classical autism is that it often *doesn't* become diagnosable until children are already past that early intervention window. I would like to see some way to identify kids with AS when they're toddlers too, because I suspect that we might find the same degree of improvement in outcomes if we could only know to start working on the problems sooner.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 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 9, 2010 Great pov sue, thx for the response . It really not only gave a unique pov but pointed out some things to consider about why dd wasnt dx until 9 and some more realistic , though hard, things to think about her future On 6/8/10, Pamela <susanonderko@...> wrote: > 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 >> > > > -- 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 9, 2010 On 6/8/10, Rose <beachbodytan2002@...> wrote: > 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 PM > Subject: ( ) 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. >> >>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 >> > > > > -- 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 9, 2010 Its hard to think about when your child is only 10, you want to believe they will get over it and outgrow it. But these description sound like my daughter . She cant do much but small chunks without supervision so now we are working on her being able to do a task independently with a checklist. She wants to be a vetrinarian, probably b/c her older sister does. Its very sad to think it will never happen, even though shes gifted she not only does not have the working memory to handle an emergency but vet school is hard to get into, they only take the top 1 percent . She will have to have a job that is repetitive which would in no way take advantage of her iq or creativity On 6/8/10, Rose <beachbodytan2002@...> wrote: > 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 PM > Subject: ( ) 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. >> >>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 >> > > > > -- 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 9, 2010 I guess I'm getting here late.I have a son with "mild" AS.He is a junior at college, where he is changing his major this year from mechanical engineering to computer engineering.He has a job building websites for companies.He has a girlfriend, has had a few.He lives with some buddies on campus.His friends are med students and military guys, oh and one is a real estate agent.He didn't receive early intervention, we didn't know he needed any.We know now it sure wouldn't have hurt anything.But our 10 yr. old with Aspergers needed it, since we've known about his issues since he was six. By then it was kind of late.But we're plugging away, now that we know!The problem we're having is that since he looks so typical, and acts so typical, til you really pay attention to it, when he opens his mouth and something socially awkward comes out, you can see his extreme deficits with it.This is his main issue, and to say that it needs a little work is an understatement.It needs to be the parents job 40 hrs. a week.And social awareness and safety issues and wh one can and cannot trust, etc.,These must be taught like it's a school subject, they have NO intuition with this stuff.People affected mildly CAN live independently.They just need help getting ready for it.If you can "pass" for "normal", whatever that is, then you ARE normal.(Think of the weird, stupid, aggravating things "normal" people do, anyways.)From: smacalli@... <smacalli@...>Subject: Re: ( ) Re: CureTo: Date: Wednesday, June 9, 2010, 12:16 PM I'd recommend to anyone who is suspicious their child has AS but can't get a diagnosis to focus on the behaviors, not the diagnosis. We were given an ADHD diagnosis when D was almost 5 but I didn't think that was really what we were dealing with. Regardless, we started meds and behavioral counseling immediately. I would never give my child a med without a corresponding behavioral intervention of some sort. We saw a psychologist for one hour, weekly, for about 3 years. My son would be the focus for 30 minutes and then I would work with her one on one for my own parenting and emotional support for 20 minutes. I can't say enough how helpful this help was! If you know something is wrong, get help for the problematic behavior. My son wasn't diagnosed with Aspergers until he was 11. If we had waited until then to get him help, he'd probably be in a very different place right now. Early intervention definitely helps.Sent via BlackBerry by AT & TFrom: "suetois" <suetoiscox (DOT) net> Date: Wed, 09 Jun 2010 15:40:48 -0000< >Subject: ( ) Re: Cure Hugs. I'm *really* sorry that I've discouraged you. :-( I didn't mean to do that. I think early intervention makes a huge difference for the final outcome with these kids. I wish I had known what was wrong with my sons when they were very young, so they could have benefitted from intervention the way your son may. One of the few disadvantages of AS compared to classical autism is that it often *doesn't* become diagnosable until children are already past that early intervention window. I would like to see some way to identify kids with AS when they're toddlers too, because I suspect that we might find the same degree of improvement in outcomes if we could only know to start working on the problems sooner. 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 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" 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 9, 2010 it can be referred to focusing on the bad or it can be said to not be hiding from the bad and sorry but the bad comes and slaps me in the face (sometimes literally) every day so its kind of hard to hide from it. But maybe the reason I focus on the bad b/c I dont believe that my childs personality is her autism, without autism she wouldnt be some bump on a log, shed still have a personality so unless a personality trait is actually listed as a symptom on a list somewhere I view it as her personality not her autism. so yes she is creative but I know thats her personality not her autism b/c all of my kids are creative, yes she is smart but again the sam ething, all my kids are gifted. maybe her persistance or passion is part of her autism or maybe her autism just amplifies it. But there are about 20 bads to maybe 1 thing that " can " be viewed as good On Tue, Jun 8, 2010 at 8:50 PM, 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. RoxannaWhenever 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>>>>>>>>>> > -- -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 9, 2010 i find that quite interesting b/c on standardized tests my dd scores in the low 90s so usually quite high, however in 2nd grade her verbal score was only in the mid 70s so considreably lower. they got the scores for 4th grade though and those have since reversed, now her non verbal is in the 70s and her verbal is in the 90s. we found that very odd On Tue, Jun 8, 2010 at 10:59 PM, Roxanna <MadIdeas@...> wrote: 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. 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 thespectrum. They are completely independent as adults and do not have theissues that other lower spectrum children have. So I think she is referring to Aspergers--not the children who can'tcommunicate or participate.Purrs & Kisses,Kristal of Digi KittyThe 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 forit “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 theyhad __________ (fill in the blank: diabetes, cancer,deafness,blindness, the list could go on and on). Many of us on thisgroup havekids 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 tobe 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'tdo 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 theworld, 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 thingsdifferently -- they're not fond of rules... You can quote them,disagree with them, glorify or vilify them, but the only thing youcan'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, wesee genius, because the ones who are crazy enough to think that theycan 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 9, 2010 Hi there.Read your post to New Zealander and realized you are another Aussie with this group.Where abouts on oz are you?KelI will keep climbing the mountain.Sent from Kel's iPhone On 09/06/2010, at 2:50 AM, "miranda.flemming" <miranda.flemming@...> wrote: 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 9, 2010 How about his one....hee hee. I want my son to have real/or better/ or more friends. He is totally okay with his social life being as it is. I'd love for him to be able to act more his age. He doesn't "get" what I mean. I'd love him to fit in with others. He feels that things are fine. It crushes me that he walks to and from school alone. That he goes to the pool alone. That he PLAYS at the pool alone. (My other ones are there, though). He just likes going to the pool. I worry about what he'll be able to do for work. He's smart....but will anyone hire him? He honestly believes he'll be a game tester or "work on computers". He'll go to college or trade school and "get a job", he says matter-of-factly. I cry about how lonely he is. He isn't lonely. I'm so proud of when he IS alone at the pool or at the park with us, or whatever, and he befriends other younger kids. He is SOOOO good with them, He just see's it as being nice. It's simply HIM. I worry about whether he'll be on his own. Sure, we could leave him for days. He's clean, cook and survive. But,,,,would he be able to get himself up every morning for work? What if we die........where will he go?I wouldn't dare bring up these fears with him......his OCD wouldnt' be able to handle it. The only thing he would change is his OCD. It cripples him at times......so he'd love that to be gone. I know there are more to list, but the kids are flying all over the place right now. I guess I agree with all of you. IF the "bad" stuff is the AS, then yeah,,,,,take it. But,,,,,,IF some the kindness and the loving himself for who he is IS the AS,,,,I WOULDN'T want that gone. He has incredible self-esteem. I could use some of that!!!! Attack and enjoy every minute of life. Try everything.....protect everything. Robin 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 9, 2010 I absolutely love how you put it! I feel so sad when my nt Daughter gets to in stay the night with friends, or has friend call her and my son never does, how kids are mean to him, but he is ok with it most of the time. You put it so well! and/or Robin Lemke <jrisjs@...> wrote: >How about his one....hee hee. > >I want my son to have real/or better/ or more friends. >He is totally okay with his social life being as it is. > >I'd love for him to be able to act more his age. >He doesn't " get " what I mean. > >I'd love him to fit in with others. >He feels that things are fine. > >It crushes me that he walks to and from school alone. That he goes to the pool alone. That he PLAYS at the pool alone. (My other ones are there, though). >He just likes going to the pool. > >I worry about what he'll be able to do for work. He's smart....but will anyone hire him? >He honestly believes he'll be a game tester or " work on computers " . He'll go to college or trade school and " get a job " , he says matter-of-factly. > >I cry about how lonely he is. >He isn't lonely. > >I'm so proud of when he IS alone at the pool or at the park with us, or whatever, and he befriends other younger kids. He is SOOOO good with them, >He just see's it as being nice. It's simply HIM. > >I worry about whether he'll be on his own. Sure, we could leave him for days. He's clean, cook and survive. But,,,,would he be able to get himself up every morning for work? >What if we die........where will he go? >I wouldn't dare bring up these fears with him......his OCD wouldnt' be able to handle it. > >The only thing he would change is his OCD. It cripples him at times......so he'd love that to be gone. > >I know there are more to list, but the kids are flying all over the place right now. > >I guess I agree with all of you. >IF the " bad " stuff is the AS, then yeah,,,,,take it. >But,,,,,,IF some the kindness and the loving himself for who he is IS the AS,,,,I WOULDN'T want that gone. He has incredible self-esteem. I could use some of that!!!! > >                       Attack and enjoy every minute of life. >Try everything.....protect everything. > >Robin > > > > > > > > >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 9, 2010 but as a child, they survive as their parents are looking after them. I find it a scary concept of my son having to cope with adult responsiblities. I can't even cope with adult responsibilities. 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). > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >“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 9, 2010 Ipswich, QLD. Moved here from NZ 3 years ago 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 9, 2010 I could be considered " mild " growing up, as mostly compliant and did exceptionally well at school (despite having mild dyscalicula) etc, but I think that was my giftedness helping me compensate (at cost of great stress). As young adult, I started getting ill from coeliac (which stuffed up my immune system). I was happily ignorant of my condition, and because I was quiet, I did make a few friends. I didn't start to be " enlightened " until late teen/early adult with so many people pointing it out/disowning me/problems in work/never had boyfriend before met my husband etc Miranda > > > > 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
Guest guest Report post Posted June 9, 2010 I've been aware my son is " different " since very young (screamed more than other kids etc), but I didn't know about AS until 2 years ago, and we have only recently been officially diagnosed (he is 7 now and is the absent minded professor, but it's the tantrums (caused by his rigid thinking and sensory issues) that is hard for us. I had to pick him up from school yesterday because couldn't cope with having a relief teacher. My anxiety disorder is flaring its ugly head and I feel like I'm drowing at the moment (money worries etc) 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 9, 2010 totally relate to the slap and the amplification. Also, food chemicals amplifies the autism. My peronality style is INTP which has a lot in common with AS anyway. But I agree, it is not my son's personality to tantrum. He actually hates losing control like this. It is not my personality to be depressed, but I suffer from depression 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 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > -- > -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 9, 2010 That's a bit of the idealism coming forth (the " special one " ). Plus Aspie's don't make first move. Hopefully, some kind, socially confident person will snap him up. If my husband didn't make the first move, I actually wonder if I would have ever had a boyfriend! I'm a very fortunate person to have a supportive person with a kind heart as my spouse. On the flip side, I did have some good male friends at uni (but could never understand why it never led to romance - maybe because they were geeks like me?) Miranda > > > > things sound quite positive for your son. I would say he has mild AS too--just like my husband. My dh has a Ph.D., a satisfying job, a successful marriage, five kids, and an abiding interest in Willow from Buffy the Vampire Slayer. It's been off the air for years now, but he still spends at least a couple of hours a day watching it and playing with screen captures from it. He's not very emotionally available. He gets pretty irked if his routines are upset. A lot of those things would be stoppers for a lot of wives, but not for me. I think his quirks are generally endearing, and I've come to understand that some of the things I wish he could give me just aren't something he can provide, and I've come to be OK with that. Things can all fall in place if someone with AS finds the right niche in life. It sounds like your son has a very good chance of finding his niche. > > > > Sue > > > Quote Share this post Link to post Share on other sites
