What is so bad about Autism Speaks?

Post Reply New Topic

I'm of the opinion that we should infiltrate and take over Autism Speaks;

TLPG et al. Re WilsonFisk. This guy's post was, as you rightly summized, a straightforward, unprovoked trolling attack. I replied in kind, by PM, last night to keep it private.

You think the experiences of Aspies are different? Have a look at the Autism spectrum top to bottom...you can't get more different than that! Yet, parents of Autistic all over that spectrum and from different mindsets are changing the face of Autism TOGETHER, making the medical communinty and society at large stand up, listen and change some of its practices. If they can do it, surely adult Aspergians can do it to. If they can take the time to bash, they can take the time to construct.

Just food for thought - I support organizations that are improving the lives of others. Nobody at AS tells people not to breed due to Autism. Eugenics is your take, but you're entitled to it.

You wouldn't stand a chance.

We're starting with the forum... Under our glorious leader ihatethefda, 2Lt Zarathustra, is making steady inroads And, we have Autism Speaks in the UK and I'm related to it's founder...

Then I better get over there to give those people some support.

In all seriousness, you have nothing better to do with your life? That board, like others, is a place where parents want to discuss issues that they're facing the same way World Planet is. What's the reason for stirring up mess with them? Are you that unhappy with your own life and having Asperger that you have to become a tyrant to other people who are also on the spectrum?

Don't people on this board understand that all of this meanness and name calling (eugenics) you put out towards others on the spectrum only makes you look like one thing, a bully? Yet, many of you have faced bullying in your own lives. You've been under attack by folks for no apparent reason other than a blinded issue or grievance they had against you.

Why put yourself in a position to look like a bunch of hateful bullies by attacking other specturm people and organizations? Surely that's not what was meant when Alex started this board...for it to be a place of acid throwing. Autism Speaks is not fighting you, you are the ones who've launched a battle against them. I thought WP was where Aspergians came together to solve their issues and connect with others. I'm being proved wrong.

It's not about causing trouble, picking fights or trolling. It's about evidence based medicine, therapy, quackbusting, supporting people and remembering that AS isn't 100% pathology.

It's not about causing trouble, picking fights or trolling. It's about evidence based medicine, therapy, quackbusting, supporting people and remembering that AS isn't 100% pathology.

Yo, dude, that's what you're doing is causing trouble. You're harrassing parents on the internet and it makes no sense. That's another board surving a different purpose. What right do you have to go over there and mess with those people like that? What have they done to you?

Aspergians like yourself want acceptance and respect. But, you're not willing to give that to others.

NewportBeachDude wrote:

What practices in the medical community are you trying to change? Specifically??

So you'd rather severely Autistic people continue to live the way they do without any additional aid?

That woman is a Class A b***h.

Autsim Speaks is very dishonest. They use exaggerated numbers they pull our of somewhere to scare people that autism is overtaking the planet but those numbers include everyone on the spectrum but their poster child for the spectrum is the rare profoundly autistic kid.

In addition, so many parents are like sheep. They focus on cures to retrieve their child who was stolen by autism and igore the very real needs of these kids. They are bad parents!

that is like asking 'are you still beating your dog?' say 'yes' or 'no' and you've still up for cruelty to animals.

can you say something with out manipulating folks?


Merle

AspieDave, do you actually have to ask? What practices do you think parents of Autistic kids are pushing for? Questions like this show the vast chasm that exists between Aspergians and Autistism, which is why you need to leave the Autistic organizations to speak for them and create ones of your own. World Planet would be a perfect place to start rallying for a National Asperger Organization and I totally support Aspergian having a voice in the public arena.

To answer your question: First of all, better and earlier screening for spectrum disorders. The American Academy of Pediatrics is mandating (thanks to organizations like Autism Speaks and others pushing for this) that Pediatricians screen children for spectrum disorders during the Well Baby checkups that every baby born gets the first years of life. Had a Pediatrician done that, our own kid would have been diagnosed 1 year and a half earlier and started intervention earlier. When you listen to parents of Autistic kids talk, most of them were failed by the very doctors that were supposed to help their kids. Most Pediatricians know very little about Autism and now that will change. BUT, THAT'S NOT ENOUGH! Pediatricians need to do screening early and know what they're looking for. Here's what parents of Autistic kids are told by doctors:

1) Don't worry that your kid's not talking at 3. Lots of kids talk late.
2) Don't worry that he's stimming. Boys are active by nature.
3) Maybe the reason why he's not making eye contact is because he's having a hard time bonding.

So, they need to understand the guidelines and not make excuses for them then we'll have half the battle won. In my opinion, the next step would be for Pediatricians to be required to take a CME course in order to renew their licenses or sooner.

Last, on this subject, we need screening that goes further than diagnosis, but offers recommendations on where parents can turn for early intervention. Nobody should have to turn to the internet to get information that should be provided right there in the doctor's office. We have a wealthy, powerful Autism Network that starts parents on their intervention in our own backyard, but he never said a word about it because he had no clue. That should change. Had the diagnoses been cancer, they would have had a cancer bible and all kinds of services waiting for us. The doctors need to point parents in the right direction.

Also, more medical insurance. This is the biggie. Medical care costs! The majority of parents dealing with Autism can't get coverage even with the best insurance companies. Companies do not want to cover Occupational Therapy, Physical Therapy, Speech Therapyk, Applied Behavioral Therapy, Sensory Therpay, and others because they are considered developmental, not medical. That is a huge problem because these are all early intervention therapies that can literally change the life of Autistic children. Slowly but surely, laws are changing but the key is that someone needs to police insurers to make sure they don't drive the premiums and deductibles up so high that parents can't afford the services. Autism Speaks is really all over the medical insurance thing and I hear they rally in Washington to make some of these changes happen.

There is much to be changed in medicine and society as far as Autism is concerned and I'm glad we have groups like Autism Speaks who speak for parents like myself.

Anyway, don't mean to argue with you, dude. Just answering the question.

I found Autism Speaks to be a helpful site.
The videos helped me see that my daughter was indeed autistic. With this information I can better understand my daughter, she has started ABA therapy at an early age. ( I realize ABA therapy is an entirely different debate) I hope this will help her better relate to the world around her, & fit in better, thereby making life a little easier & less frustrating for her. If all this makes me a bad parent, then I guess I'm a bad parent.
I do not want to rob my daughter of who she is, I want to help her show the world.