The Problem with Autism Speaks

[naraht]

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

Congratulations!

[AOII Angel]

Originally Posted by 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.

I completely agree with you. Being educated and informed is one thing. I tell my patients all the time to research their conditions, but the information you find on the Internet in no way replaces the medical knowledge of your physician. It is there to help guide patients for discussions with their doctors. Having family with you at the hospital is always advisable. Mistakes do happen, and patients and their families need to be their own advocates. As a physician, I have had a pharmacy give me wrong doses of 3 medications. If I didn't know better, I would have overdosed. (I called their district manager to complain as well as lodging a complaint with the state medical board.) When I am in the hospital, my husband or mother stays with me the whole time. If I don't like a medical opinion, I seek a second opinion from another expert in the field, because they know the science better than I do. Lastly, if I decide to do something against medical advise, I don't advertise it to others as THE thing to do. It's not responsible. I don't have outcomes data on MY choice. I decided that the risks were okay and that it wasn't worthwhile to continue with treatment. That doesn't mean that MY choice is right for others. If I swayed someone because of my position and they decided not to get treated ONLY because I didn't, and subsequently died, I wouldn't be able to live with myself. People don't consider their choices.

[KDCat]

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.

Chili's wasn't supporting AS. They were supporting the National Autism Association. It's a different organization.

[KDCat]

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! Way to go, to both of you!

You're giving me hope. We plan on pulling my kid with an ASD out of public school and sending him to community college at the first opportunity.

[Hartofsec]

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.

The reason the Chili's event was cancelled was related to the org it was to benefit -- National Autism Association -- which has been known for promoting misleading anti-vaccination (and autism-causation) information.

Though not my favorite org, in all fairness, the focus of research funded by Autism Speaks has not been anti-vaccination. The daughter of the founders of AS (Katie Wright -- whose son has autism), however, is quite involved with conspiracy theory, causation misinformation, pseudoscience, and kooky treatments.

Autism Speaks has offended quite a few members of the autism community (including parents). A public service announcement they released several years ago -- I Am Autism -- was pulled back -- it really is quite offensive (but apparently intended to be effective in fund-raising):

https://www.youtube.com/watch?v=8mycxSJ3-_Q

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 problem with the internet and media in general is that people form impressions about issues based on sound bites and things that dippy celebs like Jenny McCarthy say. There truly isn't credible information supporting that the number of vaccines in the routine childhood schedule is harmful or to blame for autism, and there is not a "phenomenal number of preservatives" in routine childhood vaccines.

Unfortunately, since the potential causes of autism are so complex and the presentations so varied, autism is a condition vulnerable to plenty of misinformation, conspiracy theory, and quackery.

[33girl]

I remember that PSA and thinking it was on the effed up side.

[naraht]

Originally Posted by Hartofsec

...autism is a condition vulnerable to plenty of misinformation, conspiracy theory, and quackery.

And Wakefield has given new life to *all* of these.

[Hartofsec]

Originally Posted by AOII Angel

I haven't seen anything about maternal obesity being linked, but meta-anyalysis can link anything.

As for naraht, I hope he was just being inarticulate.

ETA: http://www2.cfpc.ca/local/user/files....2011-2583.pdf

Found this study which does show and increased risk for obese mothers to have a child with developmental disorders. The questions remains, why?

Last week it was paternal obesity (maternal obesity found to have a weak association):

Pediatrics. 2014 Apr 7. [Epub ahead of print]
Parental Obesity and Risk of Autism Spectrum Disorder.
http://www.ncbi.nlm.nih.gov/pubmed/24709932

[Hartofsec]

Originally Posted by naraht

And Wakefield has given new life to *all* of these.

Sadly, although Wakefield has been de-licensed, debunked, and exposed in about every way possible, kooky groups promoting him as the brave maverick who fell victim to a global conspiracy try to keep his junk afloat.

Funnily enough, the same kooky people -- who promote Wakefield and are convinced that Big Pharma and the CDC are conspiring to cover participation in creating an autism "epidemic" -- also promote Big Quacka and Big Herba, and demand no safety or efficacy data of either, as long as the treatment is advertised as a "cure."

And unfortunately, a lot of children with autism have endured risky, invasive, and painful treatments because of these people. For no good reason.

(agree)

[Hartofsec]

Originally Posted by 33girl

I remember that PSA and thinking it was on the effed up side.

At the time I was trying to imagine my young adolescent son watching this ad, and hearing that he would surely cause his parents to divorce, file for bankruptcy, and cause his family embarrassment whenever they were in public. Basically that he would destroy the lives of all around him.

Just made me sick.

[CutiePie2000]

Slight lane swerve, but I had never heard of Autism Speaks until these 2 Canadian women got stabbed / slashed during the Tinker Bell Half Marathon weekend. They were running for that charity:

http://www.huffingtonpost.ca/2014/01...n_4631997.html


http://www.thestar.com/news/crime/20...land_trip.html

---------------------------------------------
This documentary, "Pink Ribbons, Inc." should be required viewing for people, before they decide to get into bed with a charity:
http://en.wikipedia.org/wiki/Pink_Ribbons,_Inc.