The Problem with Autism Speaks

[DrPhil]

Originally Posted by DrPhil

So you are speaking in general and used homosexuality only because there are people (not you) who consider homosexuality a possibly detectable and preventable disease or disorder. You were drawing a comparison and homosexuality is the "disorder" that you found relevant for this discussion based on the debate over whether this is merely about "difference" (instead of disease and disorder) and whether anything should be done to attempt to reduce the likelihood of particular "differences".

I hope I cleared that up for you.

In that case, I think this post sums up your point regarding homosexuality.

[MysticCat]

Originally Posted by DrPhil

There is a broad spectrum of autism. I have people in my family with autism, with autism that is sometimes highly functional but sometimes so extreme that they are in their late-20s and function as though they are 14-16. They have low functioning jobs and an inability to live on their own, inability to utilize their high school diplomas, inability to read a book on their own that was written with elementary school students in mind, and inability to have a full and coherent conversation with adults their age.

Therefore, I agree that autism is a "disease" and "disorder". It is far from being just "difference". I have no problem with organizations that view and research autism as a "disease and disorder".

The highly functioning people with autism and aspergers (there are also people in my family with aspergers) are closer to "difference".

This, but even the "closer to difference" isn't necessarily out of the "disorder" range in my mind. I see it as more of a "disorder" that's well-managed and worked around.

I say that based on my experience as the father of a son with Asperger's. His is really fairly mild, but there are still days that we worry about how he'll do when he's older and (we hope) on his own. We've seen a similar dynamic with the sons of others—even when they're doing well and it's a matter of navigating "differences," there can still be significant challenges.

[DaffyKD]

My son has Asperger's Syndrome and is at the higher functioning end of the spectrum. He had a horrible time in school since he was "different." He was bullied continually and would get himself into trouble when he would respond inappropriately toward the bully. Life got better when he was 16. When he graduated high school he went to the local community college that had an autism support group. I began to see a lot of growth in him at that time.

He transferred to a 4 year university 12 hours from home, moved into the dorm with a group of other roommates, became active on the housing councils and this year is the President of one council. He has had a couple of girlfriends, is a member of the debating team and best of all--------GRADUATES IN 5 MORE WEEKS!

DaffyKD

[andthen]

Originally Posted by DaffyKD

My son has Asperger's Syndrome and is at the higher functioning end of the spectrum. He had a horrible time in school since he was "different." He was bullied continually and would get himself into trouble when he would respond inappropriately toward the bully. Life got better when he was 16. When he graduated high school he went to the local community college that had an autism support group. I began to see a lot of growth in him at that time.

He transferred to a 4 year university 12 hours from home, moved into the dorm with a group of other roommates, became active on the housing councils and this year is the President of one council. He has had a couple of girlfriends, is a member of the debating team and best of all--------GRADUATES IN 5 MORE WEEKS!

DaffyKD

Congrats to your son, and its great to see he's doing so well and has successfully adapted to college life.

[DrPhil]

That warms my heart, DaffyKD, and I hope MysticCat's son will enjoy such success and independence.

The people in my family with Asperger's are doing extremely well professionally and personally. They are socially awkward (as are many people depending on the environment) and have a difficult time feeling comfortable in one-on-one conversations. But, once they are comfortable, or if they are able to complete tasks without having to be face-to-face, they do quite well.

My family members with autism in their 20s will never live on their own. One of them keeps talking about getting an apartment and getting married. We know he will never be able to get his own apartment and he will only be able to live in an "assisted living" type of apartment. His mom may pay for that or she may feel as though paying for that (and making sure he's getting the appropriate amount of assistance) may be more trouble than it is worth. I don't foresee him ever being in a consensual romantic relationship. I have seen him awkwardly attempt to flirt with a woman. He has a very loud, very deep voice and a "tongue is too big for his mouth" speech impediment. Therefore, everyone in the room heard him when he told the young woman to sit on his lap. Needless to say, she didn't find that tempting. If he ever gets in a relationship or gets married it would be with a woman who also has some disorder. I don't even know whether that is possible--perhaps it could happen if he lives in an assisted living apartment building.

[MysticCat]

Originally Posted by DaffyKD

My son has Asperger's Syndrome and is at the higher functioning end of the spectrum. He had a horrible time in school since he was "different." He was bullied continually and would get himself into trouble when he would respond inappropriately toward the bully. Life got better when he was 16. When he graduated high school he went to the local community college that had an autism support group. I began to see a lot of growth in him at that time.

He transferred to a 4 year university 12 hours from home, moved into the dorm with a group of other roommates, became active on the housing councils and this year is the President of one council. He has had a couple of girlfriends, is a member of the debating team and best of all--------GRADUATES IN 5 MORE WEEKS!

DaffyKD

Yay! Congrats to him and to you!! I see a big celebration coming.

Life for our son improved markedly when he hit high school. He likes his school, has made friends—some of whom don't know he's on the spectrum, while others don't care—and is doing well overall. His school has great support for kids on the spectrum, coordinated by an awesome resource teacher that the kids love, and overall it's generally a fairly low key, live-and-let-live kind of place. Fingers crossed.

[Xidelt]

The issue with autism speaks as a charity came up today. My husband got an email last week saying a portion of every customer's bill on Monday at a restaurant (can't remember if it was Chili's or Applebee's) was going to benefit Autism Speaks. Because of this, my husband decided to eat lunch there on Monday. Then he got another email Sunday night saying the event was canceled because of customer complaints. My husband ate somewhere else Monday, but did go to this particular restaurant today. He asked the manager about it. The manager said that customers didn't have a problem with the cause, but rather the charity Autism Speaks because of their poor financial record (such a low percentage of the money raised goes to the actual cause.) The restaurant is looking at other organizations that benefit autism and plan to do a % night later this month.

[clarinette]

I also heard that a lot of customers got mad at Chili's for picking AS as the recipient because of their support of anti-vaccination research.

[DubaiSis]

People shouldn't be mad about research even if they don't like it. They should reserve their anger for when results are skewed to suit the needs of the research sponsor. If there were lots of research done on this issue and it became more clear that the vaccinations weren't the problem (which they probably are not), then it would put that issue to bed. I have a gripe with the number of vaccinations kids are asked to take and the phenomenal number of preservatives in them. Doing studies on priority of need of certain vaccines and how to clean them up to make them more tolerable would be research well worth hearing about. Because maybe I'm wrong, but I haven't read anything so far that makes me believe injecting an infant with all those chemicals is a good idea.

[maconmagnolia]

Originally Posted by clarinette

I also heard that a lot of customers got mad at Chili's for picking AS as the recipient because of their support of anti-vaccination research.

I'm not anti-vaccination (haven't read much about the topic, honestly), but I think that any and all possible causes should be researched. If vaccinations are a possible cause, then why not look into it?

[33girl]

Originally Posted by maconmagnolia

I'm not anti-vaccination (haven't read much about the topic, honestly), but I think that any and all possible causes should be researched. If vaccinations are a possible cause, then why not look into it?

It's BEEN looked into and it most likely is not the cause.

[AOII Angel]

Originally Posted by DubaiSis

People shouldn't be mad about research even if they don't like it. They should reserve their anger for when results are skewed to suit the needs of the research sponsor. If there were lots of research done on this issue and it became more clear that the vaccinations weren't the problem (which they probably are not), then it would put that issue to bed. I have a gripe with the number of vaccinations kids are asked to take and the phenomenal number of preservatives in them. Doing studies on priority of need of certain vaccines and how to clean them up to make them more tolerable would be research well worth hearing about. Because maybe I'm wrong, but I haven't read anything so far that makes me believe injecting an infant with all those chemicals is a good idea.

The vaccination schedule has actually been studied extensively. Infants may get more shots now, but the actual antigen load is less now than it was when they got the first shots back when vaccines where first introduced. The main problem with these arguments is that people don't know anything about immunology. Vaccines have been studied more than any other drug out there. They are safe for the vast majority of patients who don't have a contraindication such as an immunodeficiency or an allergy that precludes immunization. They have been proven conclusively not to cause autism, and just like every other injectable medication, like antibiotics, have preservatives to improve their shelf life. No one throws a fit when their child gets a penicillin shot. Same preservatives. The trusty Big Pharma argument commonly used is a ridiculous argument as well since vaccines make very little money for pharmaceutical companies with many getting out of the business. The production of MMR and other major vaccines is a public service.

The reason people get angry about the constant focus on vaccines is because previously eradicated diseases are on the rise, killing and maiming innocent people including babies that are too young to be vaccinated. It also takes the focus off of efforts to find the real causes of autism. But everyone is a doctor now days, and because they have webMD and eat organic, they know better than their pediatricians.

/soapbox

[MaryPoppins]

Originally Posted by AOII Angel

The reason people get angry about the constant focus on vaccines is because previously eradicated diseases are on the rise, killing and maiming innocent people including babies that are too young to be vaccinated. It also takes the focus off of efforts to find the real causes of autism. But everyone is a doctor now days, and because they have webMD and eat organic, they know better than their pediatricians.

/soapbox

Yes, because science.

[DrPhil]

Thank you for the medical soapbox, AOII Angel.

An informed society is a healthy society. This has nothing to do with autism but I know people whose lives were saved because they educated themselves on health issues and were able to tell nurses and doctors what medications they were taking that would have a negative reaction to other medications the nurses insisted on giving them. One nurse, despite the fact that my family member and doctor had agreed that particular medications should not be mixed, tried hiding the medication under other pills assuming the patient was oblivious enough to just throw all the pills in her mouth---I was in the hospital room shocked a nurse would attempt that and glad when my family member called the nurse out.

However this doesn't mean everyone is a doctor or nurse. Being informed helps doctors and nurses do what they do effectively but doesn't replace what they do. Long gone are the days when people were not required to be educated and trained to be a medical doctor, and anyone with a needle and knife could work on your body.

[Kevin]

Originally Posted by 33girl

I think Greek orgs and their membership would be looked upon far more positively (not to mention the members would get a more positive benefit) if each chapter could gonback to choosing a local philanthropy they could do hands on work with. Bag the national philanthropies, which sometimes all the groups can do is contribute monetarily. To get the money, too often the groups either have annoying fundraisers or else an event that appears to onlookers more social than philanthropic.

Agree with all of this. Many of these charities have obscene overhead and spend very little donated money on the things people are donating money for.