mechurchlady
DIS Veteran
- Joined
- Jun 13, 2006
http://www.whitehouse.gov/agenda/disabilities/
I hope that President Obama lives up to them words and promises.
I hope that President Obama lives up to them words and promises.
Autism/ASD on White House page - good news?
- Thread starter mechurchlady
- Start date
bookwormde
<font color=darkorchid>Heading out now, another ad
- Joined
- Mar 16, 2008
Well I see it as 2 fold, it does look like it improves the chances a increased funding
Second it shows that whoever is advising him is probably from the “old school” in understanding autism.
Maybe the first will help the second.
bookwormde
Second it shows that whoever is advising him is probably from the “old school” in understanding autism.
Maybe the first will help the second.
bookwormde
Meaning??? Don't want research, funding, support, treatment?
BeckyScott
<font color=magenta>I am still upset that they don
- Joined
- Mar 5, 2007
I would be curious to know what research they deem valid.
(I don't think what I'm thinking is exactly what bookwormde is referring to, but in a way maybe it is)
I believe that the problem with autism research is that everyone has their own agenda and refuses to consider all the possibilites. I also believe that until a definitive cause is found, there's not going to be much progress in terms of treatment. Too busy arguing to make any progress.
Or, in the words of Richard Lavoie (the Fat City Video guy)-- as swiped from some African proverb-- When elephants fight, it's the grass that gets trampled.
I don't know if he's ready to take on angry parents, big pharma, the CDC, all the people making money off of autism, psychiatrists who can't agree, the special education system, the true potential cost of caring for our kids... and I would say the same thing if it were McCain... I'll keep up the hope, but I'm from the Show-Me state....
(I don't think what I'm thinking is exactly what bookwormde is referring to, but in a way maybe it is)
I believe that the problem with autism research is that everyone has their own agenda and refuses to consider all the possibilites. I also believe that until a definitive cause is found, there's not going to be much progress in terms of treatment. Too busy arguing to make any progress.
Or, in the words of Richard Lavoie (the Fat City Video guy)-- as swiped from some African proverb-- When elephants fight, it's the grass that gets trampled.
I don't know if he's ready to take on angry parents, big pharma, the CDC, all the people making money off of autism, psychiatrists who can't agree, the special education system, the true potential cost of caring for our kids... and I would say the same thing if it were McCain... I'll keep up the hope, but I'm from the Show-Me state....
bookwormde
<font color=darkorchid>Heading out now, another ad
- Joined
- Mar 16, 2008
Sorry if I was a little cryptic, of course we all want more funding for all things involving Autism, just would be nice if the curebees did not seem to be the only ones with the political influence on leaders. Once research identifies the specific genetics involved the issue of cures will go away and focus can be places on items, which actually have a reasonable chance of success.
bookwormde
bookwormde
mechurchlady
DIS Veteran
- Joined
- Jun 13, 2006
You were not cryptic. I grew up with television and media showing only autistic kids that flapped and had no communication. It was a miracle when parents did exercises and stuff to get the kids better. Nobody ever mentioned the people like Temple Grandin. I understand how you feel about research. There is no magic pill or surgery to make the spectrum disappear. I hope they look into things like diet, early intervention, providing dan doctors and other services to parents. I would like to see more research in the alternative arts and not the old school way of thinking.
I sit here and see things happen that I would never have known about just a couple years ago. There are a lot of us out there who have fallen through the cracks of life and not gotten help so I hope that they make sure they pick up the pieces.
BeckyScott
<font color=magenta>I am still upset that they don
- Joined
- Mar 5, 2007
schmeck, I'll have to think that over, it's a bit early in the morning for me.
My first reaction is "no". But after some coffee I'll put a more coherant thought together.
My first reaction is "no". But after some coffee I'll put a more coherant thought together.
Great question. I'm a "curebee", first of all. I realize for very high-functioning/Aspergers' people, there is often compensating strengths for weaknesses in social situations. Almost like the brain has said, well if I take away some abilities to understand social situations, I'll give you some strengths in analytical thinking. These aren't the folks I'm envisioning, when I think of a cure.
However, I'm very concerned with people with ASD who cannot talk, who are still in diapers at the age of 12, who's sensory system's are so overloaded they can't go to the grocery store. Or their siblings can't EVER have friends over to the house. They can't even go to McDonald's as a family. They pray at home, because their child with ASD can't handle church.
Then there are all the people with ASD who fall somewhere in the middle. Not severely autistic, but no apparent compensating strengths either. That's where our younger dd falls. I see huge potential within her. If we could just unwrap the layers that are keeping her from reaching her potential. As her parent, if they discovered a cure tomorrow, I'd be all over it.
Becky, you're exactly right. We are such a divided community. I hate that. It makes it really hard to ask for help as a group when we disagree on so many things. Other causes have such cute poster children. My child is cute, but the poster of her would be of a child running out of the shot, because she can't pay attention long enough to look at the camera! Seriously, I asked her preschool teacher to please do a module on cameras/photos. I asked her if the kids could use pretend cameras to pose for each other. Maybe something would click and they'd understand what to do when someone was taking a picture of them.
bookwormde
<font color=darkorchid>Heading out now, another ad
- Joined
- Mar 16, 2008
My view is by the time they get to be able to accomplish that level of genetic manipulation they will be able for address the underlying genetics which impact cognitive capabilities. With this comes a better ability for the individual to be “self ware” and be able to better adopt accommodations to sensory issues, which have both beneficial and negative aspects.
We all have the desire to make our children’s lives easier and more fulfilling instantly, but from a scientific standpoint it is becoming more clear that that is not in the near future, either from the cognitive end or the basic neurovariation. So having society appreciate their gift and not try to make them into a neurotypical is the most we can do, and even for the individual who a classically autistic this is reaping major long term benefits. For those in the middle where we are now compared to 10 years ago is truly amazing so the future is truly bright. Even for those on the Aspergers end the ability to truly understand themselves lifts a great burden and as acceptance of society grows so will the ability to use our gifts.
bookwormde
We all have the desire to make our children’s lives easier and more fulfilling instantly, but from a scientific standpoint it is becoming more clear that that is not in the near future, either from the cognitive end or the basic neurovariation. So having society appreciate their gift and not try to make them into a neurotypical is the most we can do, and even for the individual who a classically autistic this is reaping major long term benefits. For those in the middle where we are now compared to 10 years ago is truly amazing so the future is truly bright. Even for those on the Aspergers end the ability to truly understand themselves lifts a great burden and as acceptance of society grows so will the ability to use our gifts.
bookwormde
mechurchlady
DIS Veteran
- Joined
- Jun 13, 2006
I would take gene therapy any day if it was gluten free. Gold that thought.
BECKY
Waits for it to kick in, poor kid is a coffeemaniac, lol.
I am trying to get up to going to an allergist. I just want to know what is wrong with me, why do I have meltdowns and rock and pick and do disgusting things. Why am I a social pariah. So many of us are not diagnosed but are spectrum or some neurovariation like OCD, ADD, and SID.
How hard is it to find out the source of autism? Is it genetic predisposition or inheritance or maybe it is the flouride in the water. As for divided community, yep, all are divided. We see bookwormde but what about the ones who did not have early intervention or who are so severely autistic that they cannot function in society.
I hope the president does keep his promise and help out parents and people with autism and spectrum disorders.
BECKY
Waits for it to kick in, poor kid is a coffeemaniac, lol.
I am trying to get up to going to an allergist. I just want to know what is wrong with me, why do I have meltdowns and rock and pick and do disgusting things. Why am I a social pariah. So many of us are not diagnosed but are spectrum or some neurovariation like OCD, ADD, and SID.
How hard is it to find out the source of autism? Is it genetic predisposition or inheritance or maybe it is the flouride in the water. As for divided community, yep, all are divided. We see bookwormde but what about the ones who did not have early intervention or who are so severely autistic that they cannot function in society.
I hope the president does keep his promise and help out parents and people with autism and spectrum disorders.
BeckyScott
<font color=magenta>I am still upset that they don
- Joined
- Mar 5, 2007
Okay, I'm back, after those 8 cups of coffee that mechurchlady gave me, I'm awake for a while. 
My thought is similar to what Kirsten was saying, and perhaps also why we love our bookwormde so much.
If you cure autism, what do you lose?
I won't get into any theories about Einstein or Bill Gates, because I'm sure we already know. Temple Grandin has said (not an exact quote) that NASA wouldn't exist without Aspergers. The whole theory on the "Geek Syndrome". If we cure autism, what do we lose?
By the same token, I also understand what Kirsten is saying about those whose severity has impacted their lives (and the lives of their families) for whom a cure would be a wonderful and miraculous thing. I wouldn't ever want to deny them that cure.
DH and I had a discussion about this when we first started with the whole DAN thing. If it worked and worked perfectly, would it do something we didn't want? Would it change who our child was, in his core? Basically, would he not be the Justin we knew? Autism is pervasive and curing it would change every aspect of the child. When you look at a child, especially as they get older and they develop more personality and more skills, and try to figure out what would be different if it weren't for the autism, it's hard to imagine. The autism is so pervasive, you have no idea what you'd be looking at. And that is scary for a parent.
I guess you might be able, for comparison purposes, to look at Down's. We know, scientifically, what causes it. Most pregnant women are tested for it, and have advance knowledge. There isn't a cure in place, but we're half there on it, in that parents can be informed in advance of what they're walking into. Many parents choose to terminate. But many many do not. So we could back up this discussion and ask ourselves, if we knew in advance about the autism, what would we have chosen?
For me, it's a no-brainer answer. I would give you that answer now, of course, since I look at my son every day and see what an amazing kid he is. And because he does not spend every day in pain and banging his head on the wall and we can go to the store and we can do things many families cannot. I can't speak for those families.
But we did have an additional experience with him, a strange ironic thing that happened. When I was pregnant and they did the blood test, I had the date of my last period wrong, and the test came back high for Down's. The OB called me in immediately for another sonogram and another blood test. But for about 2 days we were faced with the possibility and knowing we might have to make a decision. And even then, I had no hesitation. DH had more. Everyone is different. When the results came back and all was okay, we thought we were in the clear. Oh the irony.
There are plenty of people roaming the streets that feel you shouldn't knowingly bring a disabled child into the world. Including my MIL.
Okay, I got a bit off-topic there but it's along the same theme. Autism has many different variations, the label is so broad, curing it would alleviate much suffering, but you might also lose something very valuable and important.
A flip side to this is, of course, if there is more than one cause and therefore more than one "cure", to look at each thing and each manifestation more closely, that there would be a way to alleviate the problems without ruining the gifts. That's an ideal situation, and pretty unlikely. I personally believe that the cause isn't as simple as a genetic variation or the immune system or the environment, but rather a magical combination of all of the above and more. As such, the only way to cure it is for everyone to work together, and that ain't gonna happen.
My thought is similar to what Kirsten was saying, and perhaps also why we love our bookwormde so much.
If you cure autism, what do you lose?
I won't get into any theories about Einstein or Bill Gates, because I'm sure we already know. Temple Grandin has said (not an exact quote) that NASA wouldn't exist without Aspergers. The whole theory on the "Geek Syndrome". If we cure autism, what do we lose?
By the same token, I also understand what Kirsten is saying about those whose severity has impacted their lives (and the lives of their families) for whom a cure would be a wonderful and miraculous thing. I wouldn't ever want to deny them that cure.
DH and I had a discussion about this when we first started with the whole DAN thing. If it worked and worked perfectly, would it do something we didn't want? Would it change who our child was, in his core? Basically, would he not be the Justin we knew? Autism is pervasive and curing it would change every aspect of the child. When you look at a child, especially as they get older and they develop more personality and more skills, and try to figure out what would be different if it weren't for the autism, it's hard to imagine. The autism is so pervasive, you have no idea what you'd be looking at. And that is scary for a parent.
I guess you might be able, for comparison purposes, to look at Down's. We know, scientifically, what causes it. Most pregnant women are tested for it, and have advance knowledge. There isn't a cure in place, but we're half there on it, in that parents can be informed in advance of what they're walking into. Many parents choose to terminate. But many many do not. So we could back up this discussion and ask ourselves, if we knew in advance about the autism, what would we have chosen?
For me, it's a no-brainer answer. I would give you that answer now, of course, since I look at my son every day and see what an amazing kid he is. And because he does not spend every day in pain and banging his head on the wall and we can go to the store and we can do things many families cannot. I can't speak for those families.
But we did have an additional experience with him, a strange ironic thing that happened. When I was pregnant and they did the blood test, I had the date of my last period wrong, and the test came back high for Down's. The OB called me in immediately for another sonogram and another blood test. But for about 2 days we were faced with the possibility and knowing we might have to make a decision. And even then, I had no hesitation. DH had more. Everyone is different. When the results came back and all was okay, we thought we were in the clear. Oh the irony.
There are plenty of people roaming the streets that feel you shouldn't knowingly bring a disabled child into the world. Including my MIL.
Okay, I got a bit off-topic there but it's along the same theme. Autism has many different variations, the label is so broad, curing it would alleviate much suffering, but you might also lose something very valuable and important.
A flip side to this is, of course, if there is more than one cause and therefore more than one "cure", to look at each thing and each manifestation more closely, that there would be a way to alleviate the problems without ruining the gifts. That's an ideal situation, and pretty unlikely. I personally believe that the cause isn't as simple as a genetic variation or the immune system or the environment, but rather a magical combination of all of the above and more. As such, the only way to cure it is for everyone to work together, and that ain't gonna happen.
mechurchlady
DIS Veteran
- Joined
- Jun 13, 2006
It would be a blessing if there was blood tests that could be done for autism. Yeah, some kids would be aborted but every child born with genetic based autism could get the early therapy. Physical therapy can be done as a baby to help with fine motor skills. Parents will be on the watch for things that the kid may be going through like OCD, SID, phobias, manias, and socialization skills. I know that for me I would be a different person and rich and in a better place if only I had all them things.
I just hope this is not another pipe dream or worse. I love helping people and being a bloodhound but would do anything to be normal. I love my gifts but want to be normal and not hated.
BECKY
A couple for the day.
I just hope this is not another pipe dream or worse. I love helping people and being a bloodhound but would do anything to be normal. I love my gifts but want to be normal and not hated.
BECKY
A couple for the day.
Laurie, I hope you get some answers at your allergist's. And know that you're loved here on the board, never hated!!! You always make me smile with your wit and virtual gifts of chocolate!
You've posted about your challenges and given many of us some invaluable insights. Despite your challenges, you are a very positive person! 
You've posted about your challenges and given many of us some invaluable insights. Despite your challenges, you are a very positive person! mechurchlady
DIS Veteran
- Joined
- Jun 13, 2006
I just found out why I do not like toothbrushing time. SID quirk is that some dirty stuff annoys me, gritty stuff. Mom would not let me clean the house so the place she put my toothbrush was gross to me and the toothpaste burnt, very strong.
Hugs Kristen tight and gives her a treadmill for all them chocolates.
I mean on other boards. This board and another are really nice to me and put up with me but I fight for kids because it is hard to not fit in.
We need a chocolate smiley.
<-- I love that smiley
Hugs Kristen tight and gives her a treadmill for all them chocolates.
I mean on other boards. This board and another are really nice to me and put up with me but I fight for kids because it is hard to not fit in.
We need a chocolate smiley.
<-- I love that smileyTracey M.S.
Earning My Ears
- Joined
- Nov 20, 2008
I just hope this is not another pipe dream or worse. I love helping people and being a bloodhound but would do anything to be normal. I love my gifts but want to be normal and not hated.
I am fairly new to the board but wanted to chime in to say that you have been very helpful to me in planning this trip. Many of the threads I have saved have info from you. I haven't been to Disney World in 19 years and I am planning this trip for my 6 year old son with Asperger's. Thank you for sharing your knowledge!!!
mechurchlady
DIS Veteran
- Joined
- Jun 13, 2006
Thank you for your kind words. I love helping people and especially kids. The future is in their hands and we must help them along in life so they will be ready to take on the future when their time comes.
I am just lacking sleep, a lot of unfair stuff, and of course I am still offering one of my mom for 10 of your kids. Offering a two fer on spectrum kids so that is one mom for 20 of your aspie kids, lol.
Now to go read up on kids and poop in the other thread, lol.Hugs and chocolates and lots of coffee.
lorac4disney
Mouseketeer
- Joined
- Sep 28, 2008
The wording of the prosposal is a bland book of worms. Give me specifics. I've read far too many legislative and federal proposals to buy into that blind line of crap. What's the catch? What's the fine lines?
I support that they seem to affirm ADA and IDEA without specifically saying so, but give me the actual wording of the bill that they are proposing. Maybe I'm just too hard core. Maybe I spent way to many years fighting for disability rights on the state and federal level as a volunteer advocate (most done at my own personal expense which exceeds the 6 figure mark). Don't patronize me with stupid statements. Give the me the nuts and glory of the exactly what you are proposing, not just a teaser.
I've played the political game for a long time. I have a knack for cutting through crap. I won't be impressed with his pro-disability stance until he can show me the real stuff and not just a puppet act.
This is not directed to the OP as I appreciate them calling this to my attention. This is directed to the politicians who take joy at stringing people who really care along.
I support that they seem to affirm ADA and IDEA without specifically saying so, but give me the actual wording of the bill that they are proposing. Maybe I'm just too hard core. Maybe I spent way to many years fighting for disability rights on the state and federal level as a volunteer advocate (most done at my own personal expense which exceeds the 6 figure mark). Don't patronize me with stupid statements. Give the me the nuts and glory of the exactly what you are proposing, not just a teaser.
I've played the political game for a long time. I have a knack for cutting through crap. I won't be impressed with his pro-disability stance until he can show me the real stuff and not just a puppet act.
This is not directed to the OP as I appreciate them calling this to my attention. This is directed to the politicians who take joy at stringing people who really care along.
BeckyScott
<font color=magenta>I am still upset that they don
- Joined
- Mar 5, 2007
Can anyone tell me what happened to all the Combating Autism Act money? I remember that was a big deal, touted on the national news, people were very excited.
Please somebody tell me that because of that act, they now get services they didn't get before, or respite care, or equipment, that their lives have changed as a result of that Act. Because at our house, all that money got lost somewhere between there and here, and I can't tell you one thing it's done for us.
I know, different administration. And it was supposed to be used for research. But still, nothing. Throwing millions of dollars at a problem expecting to "fix" it. Seriously, where did that money go? Who got it? What have they accomplished?
Please somebody tell me that because of that act, they now get services they didn't get before, or respite care, or equipment, that their lives have changed as a result of that Act. Because at our house, all that money got lost somewhere between there and here, and I can't tell you one thing it's done for us.
I know, different administration. And it was supposed to be used for research. But still, nothing. Throwing millions of dollars at a problem expecting to "fix" it. Seriously, where did that money go? Who got it? What have they accomplished?
mechurchlady
DIS Veteran
- Joined
- Jun 13, 2006
http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
You can read that while I try to find and answer for your question.
Hugs and coffee.
Laurie
update and this seems to be what happened. That ws from 2007. Still digging.
http://asa.convio.net/site/News2?JS...ewsArticle&id=9933&security=1&news_iv_ctrl=-1
http://www.ageofautism.com/2008/07/the-strategic-p.html
That is what was done up to last Summer and they need to make a Strategic Plan and as bookworm below said, government is slow. Make the plans and then fight over what is important then in a few years maybe they will start.
http://www.aucd.org/template/page.cfm?id=619
Another site and my head is emploding.
The problem is that some feel that nature such as genetics is most important and others think it is environmental stuff like vaccines and toxins. The problem is that until the past 50 years let alone 20 years kids were labelled retarded and then put in institutions or handed to parents who fended for themselves and their kids. That means that autism may have been prevalent 150 years ago but just not diagnosed. Debates on what should be done for existing people with autism. It is ongoing fighting and nothing gets done. Brownie points for Bush and 2 years later and what has been done? Probably nothing to help autistic persons, prevent autism, or identify autism genetically or through testing of young children.
You can read that while I try to find and answer for your question.
Hugs and coffee.
Laurie
update and this seems to be what happened. That ws from 2007. Still digging.
http://asa.convio.net/site/News2?JS...ewsArticle&id=9933&security=1&news_iv_ctrl=-1
http://www.ageofautism.com/2008/07/the-strategic-p.html
That is what was done up to last Summer and they need to make a Strategic Plan and as bookworm below said, government is slow. Make the plans and then fight over what is important then in a few years maybe they will start.
http://www.aucd.org/template/page.cfm?id=619
Another site and my head is emploding.
The problem is that some feel that nature such as genetics is most important and others think it is environmental stuff like vaccines and toxins. The problem is that until the past 50 years let alone 20 years kids were labelled retarded and then put in institutions or handed to parents who fended for themselves and their kids. That means that autism may have been prevalent 150 years ago but just not diagnosed. Debates on what should be done for existing people with autism. It is ongoing fighting and nothing gets done. Brownie points for Bush and 2 years later and what has been done? Probably nothing to help autistic persons, prevent autism, or identify autism genetically or through testing of young children.
Share this page
-
New Donald Duck + Disney Munchling Merch Coming to Disney Parks
-
5 Steps to Completing Your Character Autograph Book in the Disney Parks
-
See the Adorable New Light-Up Stitch Figurine!
-
Three Bridges Bar & Grill Disney World Dining Review
-
Special Pixar Speaker Series Available for Guests at Disneyland Hotels
GET A DISNEY VACATION QUOTE
Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.
Let us help you with your next Disney Vacation!
Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.
Let us help you with your next Disney Vacation!
