Page 2 of 2 [ 29 posts ]  Go to page Previous  1, 2

Tambourine-Man
Veteran
Veteran

User avatar

Joined: 2 Aug 2011
Age: 32
Gender: Male
Posts: 715

30 Nov 2011, 2:15 am

BDRC wrote:
Unfortunately, I am unable to send the link to our site in its complete form. You can find more information about who we are and a FAQ about the registry at birthdefects dot org

Our director is happy to reply to any questions over our private email. We certainly appreciate any concerns you may have. I will point out that we have never said we are searching for a cure. In fact, it is the position of our organization to learn about the possible CAUSE of any functional disability or physical birth defect. In fact, our director was one of the first people to stand up against the pharmaceutical company that released Bendectin, an anti-nausea pill given to pregnant women in the 1970s.
We are dedicated to identifying the preventable causes of birth defects. This has led us to focus on associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins.

Again we thank you for expressing your opinions.


So you don't want to cure autism, you just want to prevent it? Woah! I'm getting out of here. So many mines!


_________________
You may know me from my column here on WrongPlanet. I'm also writing a book for AAPC. Visit my Facebook page for links to articles I've written for Autism Speaks and other websites.
http://www.facebook.com/pages/JohnScott ... 8723228267


Sweetleaf
Veteran
Veteran

User avatar

Joined: 6 Jan 2011
Gender: Female
Posts: 30,166
Location: Somewhere in Colorado

30 Nov 2011, 2:55 am

Tambourine-Man wrote:
Ooh, sorry OP, you just walked through a minefield and tripped every single mine. Luckily you posted this in the parents section.

If I was a jerk, I'd tell you that you'd have better luck in the Autism Politics and Activism section. I'm not a jerk. DO NOT post this there. You will be eaten alive.


I agree, don't post there.....unless your ready to deal with lots of BS.


_________________
Welcome to hell, this is the end.


Sweetleaf
Veteran
Veteran

User avatar

Joined: 6 Jan 2011
Gender: Female
Posts: 30,166
Location: Somewhere in Colorado

30 Nov 2011, 2:56 am

and i don't want to start anything at all........but why do you and your organization want to prevent autism exactly?

I mean sure there are some downsides but sometimes its society that causes more of a problem then the individuals who differ from the norm.


_________________
Welcome to hell, this is the end.


ASDMommyASDKid
Veteran
Veteran

User avatar

Joined: 27 Oct 2011
Gender: Female
Posts: 3,786

01 Dec 2011, 1:23 am

I am going to pile on too, because I am also offended.

I don't like being called defective, and I do not like my child being called defective. Did you even lurk on this site before posting? You've made a number of very faulty assumptions.

I like my autistic qualities most of the time when the world doesn't make it super-duper hard. I appreciate these qualities in my son. Do we have a rough go of it sometimes? Heck, yeah. I would still rather be me with my autistic-ish interests and priorities than not. Some people feel that way others don't.

So, assuming we are some monolithic group of hysterical Mommies desperate for a cure was off-base, and I think your subsequent responses show you still do not understand.

I am sure the Anti-Vaccine people think they are fighting the tough fights, too. It does not make what they do legitimate science, or mean that have desirable ends.

So what is your actual goal then?



Ganondox
Veteran
Veteran

User avatar

Joined: 7 Oct 2011
Age: 23
Gender: Male
Posts: 5,801
Location: USA

01 Dec 2011, 1:57 am

I was going to tear a new one, but after I saw the bloodshed that has already occurred I see that I don't have to.


_________________
Cinnamon and sugary
Softly Spoken lies
You never know just how you look
Through other people's eyes

Autism FAQs http://www.wrongplanet.net/postt186115.html


SuperTrouper
Veteran
Veteran

User avatar

Joined: 1 Jun 2009
Gender: Female
Posts: 1,117

01 Dec 2011, 6:17 am

I'm glad there was no "prevention" for autism before I was born!



momsparky
Veteran
Veteran

User avatar

Joined: 26 Jul 2010
Gender: Female
Posts: 3,831

01 Dec 2011, 8:53 am

So am I, SuperTrouper! EEegh! What a horrible world it would be without people like you (and me, and my son) in it!



Sockitmama
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 27 May 2011
Gender: Female
Posts: 29

01 Dec 2011, 9:25 am

I'd like to put this out there: What would be a better term than 'birth defect'? If we are to describe infants that have physiological, neurological, or structural anamolies during development and at/during birth, what would be the appropriate term for the medical and scientific community to use?

We're all human, but some of us are born with or develop medical challenges. How can we help the medical community better define this category of infants who are born with medical issues such as autism, cognitive limitations, congenital issues, Fragile X, CP, etc...


_________________
The future belongs to those who believe in the beauty of their dreams. - Eleanor Roosevelt


SylviaLynn
Veteran
Veteran

User avatar

Joined: 9 Feb 2008
Age: 62
Gender: Female
Posts: 534
Location: Albuquerque, NM

01 Dec 2011, 10:19 am

How about "anomaly"? The technical term for a birth anomaly involving shape is dysmorphia.


_________________
Aspie 176/200 NT 34/200 Very likely an Aspie
AQ 41
Not diagnosed, but the shoe fits
10 yo dd on the spectrum


momsparky
Veteran
Veteran

User avatar

Joined: 26 Jul 2010
Gender: Female
Posts: 3,831

01 Dec 2011, 11:39 am

I think there's two different issues here - one is the use of the word "defect" which is a negatively-charged word, especially when generalized. Maybe "born with a disability" or "born with a disabling condition," make it seem less like they are factory seconds.

Second is the implication that we should be working to "prevent ASDs in other children." implying a lack of understanding of the autism spectrum on multiple levels.



ASDMommyASDKid
Veteran
Veteran

User avatar

Joined: 27 Oct 2011
Gender: Female
Posts: 3,786

01 Dec 2011, 1:36 pm

I looked at their website and indeed the thrust of the organization is "preventing" environmentally caused "birth defects." Putting the horrifyingly insensitive "birth defect" terminology on the side, for now, I really don't see this being the appropriate organization to really do anything constructive. It sounds like they are going to parse through data looking for a recurring chemical component that parents of spectrum kids were exposed to, or something of that type.

First off, the Autistic Spectrum is an umbrella term lumping in people with similar (though in some ways very different) issues. Likely it is a combination of factors and that each has a different set of contributing causes. Environmental factors may act as triggers or contribute in some way, but there is a lot of evidence of genetic components, and I think focusing on exclusively on environmental factors is a trip down a rabbit hole.

I don't see any evidence that this group has any notion of the complexity involved. Even if I agreed with their apparent goals, I don't think the answer is going to be as simple as let's not put x chemical in y product. I see no evidence of any nuance or holistic understanding at all
in anything that was communicated. The unfortunate terminology is just the tip of the iceburg.

I also suspect (maybe I am wrong) that because the autistic spectrum is au courant (slight sarcasm, here) that maybe the notion is if they branch out into autism they might get more donations/grants.

Edited to reiterate that I don't think prevention is the appropriate goal. Learning how to cope in an NT world, and NT acceptance are key to me, at any rate. It isn't that I am not curious about the science. I am, but that is in a special interest way, not as in a "let's prevent people with autistic traits from being born" way. Autistic people have much to offer when given the right tools and a friendly environment.



liloleme
Veteran
Veteran

User avatar

Joined: 8 Jun 2008
Age: 51
Gender: Female
Posts: 1,922
Location: France

01 Dec 2011, 2:42 pm

My children and I are not defective we are enhanced with highly intelligent brains and unique ideas and insights that typical people will never understand nor realize. Without us there would be no computers or internet or cool video games or Pokemon or some incredible music, art and novels. I could go on and on but I think you get the picture.



Mummy_of_Peanut
Veteran
Veteran

User avatar

Joined: 20 Feb 2011
Age: 46
Gender: Female
Posts: 3,611
Location: Bonnie Scotland

01 Dec 2011, 2:44 pm

I'm seriously offended by the word 'defect'. Some of the so-called defective people are also geniuses, many whom have made the world a better place. I'm not saying that all people with ASDs have hidden talents. But if ASDs had been gotten rid of within the last century, I doubt there would be any computers for us to be having this conversation with or they'd be way different from what they are. Remove the ASD and you remove the genius too. Of course, for some their ASD is a huge hindrance to daily living, but I firmly believe we need to find ways to help them work with it, not make them feel less perfect.

I took a look at the list of conditions that the oganisation can provide info on. One of the conditions I remember seeing was cystic fibrosis. Now, I'm not an expert on the matter, but as far as I know CF, has a known genetic cause. There are several variations of CF, but we know it's hereditary and nothing to do with environmental toxins, etc. Why is this organisation dealing such conditions, if their aim is to prevent them? At the moment, the only way to prevent a baby being born with it is by embryo selection or termination. There's no cure, but it can be treated and a cure is hoped for. I would not term this as a birth defect at all, it's a genetic illness/ condition.


_________________
"We act as though comfort and luxury were the chief requirements of life, when all we need to make us really happy is something to be enthusiatic about." Charles Kingsley


Washi
Veteran
Veteran

User avatar

Joined: 25 Nov 2010
Age: 42
Gender: Female
Posts: 804

01 Dec 2011, 3:57 pm

As someone who was born with choanal atresia and other defects/anomalies and as a parent of an autistic child I don't find this offensive. I appreciate the effort to stop corporations from using chemicals in products that literally can change a person's DNA. By preventing autism I presume the OP was referring to stopping corporations from exposing people to these chemicals (if so I thank you for your efforts) not by aborting suspected affected babies (I hope), though in the future you may want to say as much because as you can see that's the first thing many people think of when they hear "autism prevention".