les63
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Post by les63 on Mar 30, 2014 21:20:41 GMT -5
With that I am logging out. I know this is a sensitive issue with me. Unless you deal with it daily it doesn't really affect you. But it does affect your schools. I would think some of you would be fighting to find out what the hell is going on? I know there are people out there that may play this up. My son goes to school and he does have Medicaid. Other than that at the moment he has nothing else. He looks normal until you see how he walks. On his toes. Doesn't talk. Is still in diapers. I'm not taking anyone to the cleaners. It just hurts when I see how people post that are not on the front lines. The majority of parents living with autism are not getting any help and it really sucks. It is the minority of people messing with the system that makes it harder for those that need help. The Federal government needs to step up and make some changes so states have to comply with certain things. The states are all over the place with helping some of these parents. That has got to change. But like I said previously; government helping? Yeah, right.
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les63
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Post by les63 on Mar 30, 2014 21:26:10 GMT -5
Clicked on your link Mich. Big whoop. Like the bloggers on Age Of Autism say: and the band played/s on..... the autism community is Really getting tired of the continual bullshit.
With that I'm out....
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NastyWoman
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Post by NastyWoman on Mar 30, 2014 21:51:24 GMT -5
Mich, I clicked on your link too. Very interesting! One has to wonder how much overlap there is in the different categories? For instance, things like obesity and heart disease. But more to the point of the current discussion: would some/a little/ a lot of the research in behavioral sciences overlap? I am not implying that autism is a behavioral issue, but maybe in research people are looking into how behavioral therapy might help certain people on the autism spectrum help to cope and survive in society?
it is unfortunate IMO that, in an effort to "classify" our society, the DSM grouped together those with severe autism (like Les' son) together with other less severely affected patients. It would seem that, as a society we like to keep things simple, and as a result we all know someone with this disorder (I don't use the word disease on purpose, since to me at least that implies that there has to be a pill out there that can fix it all and I am afraid there may not be one). Just to be clear, I am NOT. Advocating that we abandon all but the severe cases! Their challenges, while different are just as real.
But I have a curious mind and would really like to know in which direction current research is taking us.
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Post by Deleted on Mar 30, 2014 22:00:20 GMT -5
Mich, I clicked on your link too. Very interesting! One has to wonder how much overlap there is in the different categories? For instance, things like obesity and heart disease. But more to the point of the current discussion: would some/a little/ a lot of the research in behavioral sciences overlap? I am not implying that autism is a behavioral issue, but maybe in research people are looking into how behavioral therapy might help certain people on the autism spectrum help to cope and survive in society? it is unfortunate IMO that, in an effort to "classify" our society, the DSM grouped together those with severe autism (like Les' son) together with other less severely affected patients. It would seem that, as a society we like to keep things simple, and as a result we all know someone with this disorder (I don't use the word disease on purpose, since to me at least that implies that there has to be a pill out there that can fix it all and I am afraid there may not be one). Just to be clear, I am NOT. Advocating that we abandon all but the severe cases! Their challenges, while different are just as real. But I have a curious mind and would really like to know in which direction current research is taking us.It really depends on the lab. Some labs focus on one chemical or protein interaction that have been shown to affect something on the spectrum, some only focus on the genetic, some have moved the former into animal models with treatments. Still others have been working on treatments in humans and prevention. I know a few people work on this from multiple directions and disciplines and it is quite offensive to hear people say they don't care. One friend often works over sixty hours a week (often over 70) to try to fit all the research she wants to do, before her time ends in the lab because she cares about solving a little some part of this.
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Miss Tequila
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Post by Miss Tequila on Mar 30, 2014 22:04:31 GMT -5
With that I am logging out. I know this is a sensitive issue with me. Unless you deal with it daily it doesn't really affect you. But it does affect your schools. I would think some of you would be fighting to find out what the hell is going on? I know there are people out there that may play this up. My son goes to school and he does have Medicaid. Other than that at the moment he has nothing else. He looks normal until you see how he walks. On his toes. Doesn't talk. Is still in diapers. I'm not taking anyone to the cleaners. It just hurts when I see how people post that are not on the front lines. The majority of parents living with autism are not getting any help and it really sucks. It is the minority of people messing with the system that makes it harder for those that need help. The Federal government needs to step up and make some changes so states have to comply with certain things. The states are all over the place with helping some of these parents. That has got to change. But like I said previously; government helping? Yeah, right. This is an honest question...what exactly do you expect the taxpayers (after all, they are the ones funding the government) to do? I'm a mom of a special needs child and I'm confused as to what you expect. By law our children do receive an education. Other than that, the cost of raising our children (typical or special needs) falls to the parents. I don't expect government support for my child but maybe I'm not understanding what kind of support you mean.
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NastyWoman
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Post by NastyWoman on Mar 30, 2014 22:08:03 GMT -5
Gin, you just put your finger on one of the many missing links. On the one hand there are people like Les who can't seem to be able to get the support she needs and on the other hand there are people like your friend who work themselves silly just to try and solve this horrible problem. Yet these two groups don't meet most of the time leaving one group feeling abandoned and the other unappreciated. Sad but valid from either POV.
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mmhmm
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Post by mmhmm on Mar 30, 2014 22:16:43 GMT -5
Of course people care. My children are grown. I have grown grandchildren, a toddler greatgranddaughter and another due in May. I care. I read, I try to learn, I try to help where, and when I can. I'm pretty sure most people are just like me. They care, but don't know what they can do besides help when and where they can.
As I read on this subject, because of my work of many years, I tend to put information together and posit possible answers. I, however, have nothing to go on except what I read, or what I get in anecdotal form from those who deal directly with the problem - parents, teachers, and medical people. All we can do is compile the information we receive. I'm not a research scientist. I can't do much with that information except guess. What I do know suggests multiple elements playing into the end result. The latest research appears to show at least part of the problem is there at birth (placental signs). This could indicate a genetic component, or it could indicate something in one, or both parents, or it could indicate something specific to the mother's environment and/or body habitus while she carried the child. Sadly, at this point, we just don't know the answers.
There's also the matter of diagnostic effects. Once we find something and give it a name, we're a bit like bulldogs. We just keep looking for more of it. We begin to find it all over the place. We lump patterns of behavior together and decide this means those with these behaviors fit into "the spectrum". I feel, for various reasons, we do too much of this. We want to categorize everybody so we can "fix" them where they're "broken". Yet, people have always been individuals. Everyone isn't alike and shouldn't be expected to be alike. That's been true since the beginnings of the human race. I've got to wonder how much that "fix it" attitude plays into some of this.
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Post by Deleted on Mar 30, 2014 22:16:56 GMT -5
Gin, you just put your finger on one of the many missing links. On the one hand there are people like Les who can't seem to be able to get the support she needs and on the other hand there are people like your friend who work themselves silly just to try and solve this horrible problem. Yet these two groups don't meet most of the time leaving one group feeling abandoned and the other unappreciated. Sad but valid from either POV. My friend does not feel unappreciated, she knows why she is doing what she is doing. Why would you waste her time, that could actually solve something so that the parents can meet researchers? That is the responsibility of the MDs and societies who work in autism related diseases, not the researcher who quite frankly have enough on their plate. She should not have to waste her time explaining that autism is not related to vaccines, you can bother your doctor.
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busymom
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Post by busymom on Mar 30, 2014 22:22:10 GMT -5
For me personally, I would like one of the government studies to pinpoint if there's anything a parent can do to reduce the chance of your child getting autism. Most of us know things we can do (or not do) to reduce our own risk of getting certain types of cancer, for example, but after all of these years no one can tell us anything to keep the next generation of children from getting this. I think the not knowing is what is so haunting to parents who raise these kids. We've always done outside therapies in addition to whatever services were offered by the school district (and many times, paid for it out of our own pocket). Between therapy, & trying to assist DS with his homework, frankly I don't have much for spare time to advocate for better services & more research. Unfortunately, unless major improvements happen in the next few years, my own DS will most likely end up in some sort of group home, but, he has improved enough that he will probably be able to work a job(don't know at this point if it would be part-time or full time). But, you can bet that once I've got more time, one of the things I will be doing is advocating for all of these kids.
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Virgil Showlion
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Post by Virgil Showlion on Mar 30, 2014 22:24:40 GMT -5
I got the impression that the OP was stating "1 in 68 Children Have Autism - 42 of those 1 in 68 Children are Boys" - meaning there is a much higher percentage of boys diagnosed with Autism than girls. Ah. So the ratio would be approximately 3 autistic boys to 2 autistic girls, rather than the 4.25 boys to 1 girl I calculated earlier. But you can see where my confusion came in. Maybe I have autism. Is there an online test somewhere that can tell me if I do?
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Post by Deleted on Mar 30, 2014 22:30:15 GMT -5
For me personally, I would like one of the government studies to pinpoint if there's anything a parent can do to reduce the chance of your child getting autism. Most of us know things we can do (or not do) to reduce our own risk of getting certain types of cancer, for example, but after all of these years no one can tell us anything to keep the next generation of children from getting this. I think the not knowing is what is so haunting to parents who raise these kids. We've always done outside therapies in addition to whatever services were offered by the school district (and many times, paid for it out of our own pocket). Between therapy, & trying to assist DS with his homework, frankly I don't have much for spare time to advocate for better services & more research. Unfortunately, unless major improvements happen in the next few years, my own DS will most likely end up in some sort of group home, but, he has improved enough that he will probably be able to work a job(don't know at this point if it would be part-time or full time). But, you can bet that once I've got more time, one of the things I will be doing is advocating for all of these kids. To my knowledge that answer is not out there yet. We really don't know causes merely correlations at this point. Things that we do know are of no help to parents like we know that a decrease in scaffolding proteins increases the phenotypes of autism, but really that does not help. And researchers know that, and are trying and do very much care about those who have this disorder.
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mmhmm
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Post by mmhmm on Mar 30, 2014 22:37:48 GMT -5
I got the impression that the OP was stating "1 in 68 Children Have Autism - 42 of those 1 in 68 Children are Boys" - meaning there is a much higher percentage of boys diagnosed with Autism than girls. Ah. So the ratio would be approximately 3 autistic boys to 2 autistic girls, rather than the 4.25 boys to 1 girl I calculated earlier. But you can see where my confusion came in. Maybe I have autism. Is there an online test somewhere that can tell me if I do? Here ya go, Virgil.
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Post by The Walk of the Penguin Mich on Mar 30, 2014 22:40:25 GMT -5
For me personally, I would like one of the government studies to pinpoint if there's anything a parent can do to reduce the chance of your child getting autism. Most of us know things we can do (or not do) to reduce our own risk of getting certain types of cancer, for example, but after all of these years no one can tell us anything to keep the next generation of children from getting this. I think the not knowing is what is so haunting to parents who raise these kids. We've always done outside therapies in addition to whatever services were offered by the school district (and many times, paid for it out of our own pocket). Between therapy, & trying to assist DS with his homework, frankly I don't have much for spare time to advocate for better services & more research. Unfortunately, unless major improvements happen in the next few years, my own DS will most likely end up in some sort of group home, but, he has improved enough that he will probably be able to work a job(don't know at this point if it would be part-time or full time). But, you can bet that once I've got more time, one of the things I will be doing is advocating for all of these kids. Since they have no idea of a cause, then how can they suggest things that reduce risk? At best, they have a few correlations, but unfortunately correlation does not equal causation. It is a step, a very loose step but it at least gives you an indication of direction. Research is a lot of dead ends. 90% of what we find (regardless of subject) many times has no impact on anything, it is just another clue of what it is not. The few announcements that the popular press makes are usually waaaay overstated and the authors do not make the proclamations that the press claims.
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Virgil Showlion
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Post by Virgil Showlion on Mar 30, 2014 23:05:12 GMT -5
Ah. So the ratio would be approximately 3 autistic boys to 2 autistic girls, rather than the 4.25 boys to 1 girl I calculated earlier. But you can see where my confusion came in. Maybe I have autism. Is there an online test somewhere that can tell me if I do? Here ya go, Virgil.Thanks. The article indicates the average is 16.4, and 80% of those diagnosed with autism or a related disorder scored 32 or higher. I scored a 25. So 8.6 points above normal, but 7 points short of the "hot zone". One unusual feature of the test is that the scoring doesn't differentiate between "definitely" and "slightly" in any of the questions. Only the "agree" or "disagree" factor is ultimately relevant. I wonder if they put in four possible responses simply because it's a standard scale or if there's a deeper reasoning behind it.
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Post by Deleted on Mar 30, 2014 23:10:35 GMT -5
Thanks. The article indicates the average is 16.4, and 80% of those diagnosed with autism or a related disorder scored 32 or higher. I scored a 25. So 8.6 points above normal, but 7 points short of the "hot zone". One unusual feature of the test is that the scoring doesn't differentiate between "definitely" and "slightly" in any of the questions. Only the "agree" or "disagree" factor is ultimately relevant. I wonder if they put in four possible responses simply because it's a standard scale or if there's a deeper reasoning behind it. Yes four is standard because of the reasons behind it.
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ՏՇԾԵԵʅՏɧ_LԹՏՏʅҼ
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Post by ՏՇԾԵԵʅՏɧ_LԹՏՏʅҼ on Mar 30, 2014 23:23:43 GMT -5
I scored a 17 on this test - I assume that means I'm on the 'normal' spectrum.
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mmhmm
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Post by mmhmm on Mar 30, 2014 23:44:56 GMT -5
I scored 21. I put it down to the fact I tend to be a loner if left to my own devices. All in all, it seems like a pretty good test for the kind of behavioral patterns one sees in those said to be on the autistic spectrum. I don't, however, think it's a real diagnostic tool, and it doesn't claim to be. There are just way too many variables to be considered when trying to ascertain if an individual's behavioral patterns are enough to include them on the spectrum, as far as I'm concerned. It sometimes seems to me we're looking for reasons to put someone in a "proper box" rather than looking for reasons to allow each person to be him/herself, warts and all. That's not to say there are not some who really, really need assistance.
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busymom
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Post by busymom on Mar 30, 2014 23:45:20 GMT -5
I scored 14, which I suppose makes me boring.
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Sum Dum Gai
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Post by Sum Dum Gai on Mar 31, 2014 0:13:04 GMT -5
www.ageofautism.com/2014/03/multi-meme-look-at-1-in-68-with-autism.htmlHere's my take: Nobody really gives a shit unless it hits their family. Trust the government; yeah right. Gee, the families that are dealing with this are lying. Mmm, what else. Oh to the poster that compares this to homosexuals? Aren't you the one that is bitching and moaning that all the special need's kids are taking too much money out of school districts? I think you of all people wouldn't like these new numbers. But hey, lets compare autism to homosexuals. Gee, the CDC is taking this from children born in 2002. Let's go there shall we? What about 2003, 2004, 2005, etc. With all the crap the government spends the CDC can't do better than this? Trust these people and the government. Yeah, right. Your son has autism and that sucks. I won't say I understand, because I have no idea how hard that really is. I'm truly sorry you and he are going through that. You're wondering why the public doesn't seem up in arms about it, and I'm trying to explain. 1 in 42 is a good headline, but it's only 2.4% of children. That's not going to directly affect very many families. Compare it to something like obesity which affects over 20% of children. 1 in 4. That gets people's attention and directly affects a LOT more families.
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The Captain
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Post by The Captain on Mar 31, 2014 7:04:43 GMT -5
I scored 30 and am not surprised. I generally do much better with numbers than with emotions. Whereas social interactions come naturally to some people, it's something I have to work very hard at and am ALWAYS uncomfortable in new situations.
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skubikky
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Post by skubikky on Mar 31, 2014 7:50:00 GMT -5
I originally liked this post....until I went back and reread the vaccination comment. vaccines DO NOT have any correlation to autism. I would never suggest skipping vaccinations. But, having dealt with DS & his problems & an overwhelming-at-times therapy schedule, if I had it to do over, I would've spaced out his vaccinations more. Not so many multiple pokes on one office visit. What else might you have done? Eaten a completely organic, meat free, dairy free diet? Made certain that you lived where the air is very clean and you weren't exposed to CO fumes from car exhaust? How about the water you drank? Might you have been certain to only ingest the purest filtered water possible? Never worn clothing that wasn't made of organic, chemical free materials? My point is that there are many things that we are exposed to that are not adding to our overall health. All of these things are equal candidates that might be at the source of developmental problems.
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taz157
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Post by taz157 on Mar 31, 2014 7:55:27 GMT -5
I got a 23.
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skubikky
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Post by skubikky on Mar 31, 2014 8:02:51 GMT -5
Their IQ isn't higher, half have average to higher, that's not all of them. I get that this is a major heartache in your life....but your nastiness isn't doing anything to get me to read your posts objectively. I have not experienced what you have but that doesn't give you license to lash out.
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gooddecisions
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Post by gooddecisions on Mar 31, 2014 8:16:16 GMT -5
Autism hasn't personally affected my family yet, but I disagree about the lack of public awareness and action. I can think of very few causes that are getting as much attention as Autism. My city has early intervention programs (free), programs for ages 2-4 (free), programs in the public schools (free), private tutoring programs, private schools, university programs, 10k charity runs, charity balls, library programs just for kids with autism (free), days at the jump zones and childrens museum just for autistic kids (free), and the list goes on and on. And, I'm not expert, these are just things I'm aware of happening. There are constantly media articles and celebrities speaking out. I'm on several local facebook swap pages and parents have really rallied additional grassroots movements to get more activities and support. If you're not seeing things happening in your community, you may have to lead it. This isn't some dirty secret being quieted.
I would also like to know what the OP expects since this is already one of causes that gets the most attention and funding (and rightfully so, in my opinion). If it's research and a cure, I suspect the medical and research community is already doing as much if not more than any other cause.
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busymom
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Post by busymom on Mar 31, 2014 8:18:10 GMT -5
I believe what Les is pointing out, is, the number of kids with autism is continuing to grow at a fast rate, but the media falsely makes it sound like they're all smarter than average, but only socially awkward, so they'll be o.k. Some will be o.k., but many will need supervision their entire lives. It IS frustrating when a complex disability is trivialized by the media to convince the general public that "everything is going to be all right".
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Formerly SK
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Post by Formerly SK on Mar 31, 2014 8:34:03 GMT -5
Holy crap I got a 36 on that test!
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Post by Deleted on Mar 31, 2014 8:45:11 GMT -5
I believe what Les is pointing out, is, the number of kids with autism is continuing to grow at a fast rate, but the media falsely makes it sound like they're all smarter than average, but only socially awkward, so they'll be o.k. Some will be o.k., but many will need supervision their entire lives. It IS frustrating when a complex disability is trivialized by the media to convince the general public that "everything is going to be all right". And Miss T pointed out that her DD had a "false" diagnosis in order to qualify for services. I wonder how many more false diagnoses are contribute to the growing numbers?
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Formerly SK
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Post by Formerly SK on Mar 31, 2014 8:52:15 GMT -5
I believe what Les is pointing out, is, the number of kids with autism is continuing to grow at a fast rate, but the media falsely makes it sound like they're all smarter than average, but only socially awkward, so they'll be o.k. Some will be o.k., but many will need supervision their entire lives. It IS frustrating when a complex disability is trivialized by the media to convince the general public that "everything is going to be all right". My son is definitely smarter than average. But smarts don't count for anything if he can't communicate his ideas and produce work that an employer would want to pay for. He's in 3rd grade and needs everything scribed for him - if there isn't an adult to sit and keep him on task and write down his ideas, he doesn't get any work done. Actually, his brain spins so much his teacher and I are pretty convinced he misses most of the lessons she teaches at school. I have no idea if this will improve as he gets older or not, and I most definitely worry that he'll spend his adult years in a bedroom in my house scribbling out all these equations on ripped up pieces of paper that no one will be able to understand or work with because he can't organize himself to communicate them. I really worry about all these kids once they become adults. I have an autistic kid at school that I work with every day. He's huge for his age, black, has some cognitive retardation, and is always scowling and grumpy. I'm trying to teach him civility and manners, because the reality of being a large, moody black man with MR is not pretty. He's pretty much destined to go to jail and it makes me so sad. All of these kids will grow up, and if they can't function in society they will be in jail or on the streets. I think that's the point that gets forgotten a lot. It may be a family matter now (ie "why should govt help parents with these kids?") but once these kids grow up autism will be a societal issue.
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Post by The Walk of the Penguin Mich on Mar 31, 2014 8:57:45 GMT -5
Most people are involved in causes that directly affect their family. Autism has not hit mine, so it is not a cause that I jump on the bandwagon, other than peripherally. However, other diseases have, and those are the causes that I tend to contribute to.
I suspect I am no different than anyone else here.
However, in the link I posted about NIH funding, autism gets more federal research $$ than childhood leukemia, cervical cancer and quite a few more diseases....it most definitely is NOT at the bottom of the pack.
My neighbor does have a kid with autism and I know she is VERY involved in not only local events, but those throughout the state of WA. There are very few weekends where they are not taking a jaunt off to other locations for some autism event.
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chiver78
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Post by chiver78 on Mar 31, 2014 8:59:54 GMT -5
I believe what Les is pointing out, is, the number of kids with autism is continuing to grow at a fast rate, but the media falsely makes it sound like they're all smarter than average, but only socially awkward, so they'll be o.k. Some will be o.k., but many will need supervision their entire lives. It IS frustrating when a complex disability is trivialized by the media to convince the general public that "everything is going to be all right". I would agree with that assessment, but your child is also affected and your posts are not even close to as angry as hers are. I know that she has a lot of other stress in her life at the moment, but her anger is way misdirected. the posters on this board who are not directly affected are looking at autism objectively, from the perspective of their own experience (some technical/scientific, myself included) while she's borderline attacking us for our seeming insensitivity and "spouting the same bullshit over and over again" to paraphrase. I do feel for you, les. I wish I could blink and make everything okay for you, but I can't. that doesn't make me an uncaring monster though.
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