Stop Bashing Autism Speaks!

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I accept that.

I do think you should look for less biased sources of information.

(I'm the first to admit that I am biased against Autism Speaks (and their tentacle, in the UK: Autistica). I think I have just cause... in their redirection of funds into their own pockets.)

In that case, they should rename themselves "Parents with Autistic Children Speaks, or PWACS" and give us the "Autism Speaks" title.

I don't know what they means, but testicles are funny.

It's almost unbelievable. Every time Autism Speaks says they've changed, they promptly come out with another video demeaning autistics, demanding that they (we) be eradicated, and soliciting money to get rid of us.

I'm waiting for their next campaign. Will it be "Let's make the poor, unfortunate autistics understand how to be normal". Maybe it will be "We have the technology to prevent autistic births, but we just need a few million dollars to implement it!"

Yes it is almost unbelievable. Link please?

Offhand, I only can come up with the parody of their recent video:
http://www.youtube.com/watch?v=yU2paLv1MGE
They eventually removed all links and access to the original, so far as I am aware. It would be nice if someone still had a link to a copy of that.

Here is a link to the story about the Video from Time magazine. The controversy happened two years ago. The response from Autism Speaks regarding removing the video below:

http://www.time.com/time/health/article/0,8599,1935959,00.html

I've just remembered... that they came out with yet another demeaning video, more recently. Curiously, I have no real; impetus to dig it out.

...

Or maybe I'm imagining that. It is, after all, just what they do - be quiet for a while, then "astound" the world with the (unchanged/unchanging) statistic of 1%.

I'll stop bashing Autism Speaks when they stop bashing Autism.

Autism's been good to you then?

>Implying we're all low functioning.

They may have lower statistics to report after the DSMV comes out, considering PDD NOS is the majority of diagnoses, and the new criteria doesn't match up with the existing criteria.

But, we might not hear reports of it, in the US, until close to the end of the decade.

They rely on the US government for their statistics, which were reported in 2009 taken from data in 2006.

When Autism Speaks started out in 2004 the data was from the year 2002, which was 1 in 166 at that point in time.

So, the numbers of diagnoses only went up one time as reported in 2009 to 1 percent, before that it was .6 percent.

If the current trend and method of collection of statistics by the government holds true, the next data presented will be for the year 2010, and reported in 2013. It will likely go up some more, because of further increases in awareness and diagnosis.

The DSMV will quietly go into effect, some diagnoses will potentially change or no longer be made because of the differences in criteria, but we may not hear about an acutual leveling off of the statistics until 2019. Looks like the government and Autism Speaks may potentially have 7 more years to suggest that the frequency of diagnoses continue to spiral upward.

http://www.cdc.gov/ncbddd/autism/data.html

In 1994 when Aspergers appeared along with renewed critieria for PDD NOS that reduced the criteria to only 1 element of the triad of core elements: Communication-Social Interaction-Repetitive Behaviors, numbers of PDD NOS increased dramatically, not surprising that it was alarming; however, at least in part, it was caused by an editorial mistake in the DSMIV that wasn't corrected until 6 years later, that was intended for 2 of the core elements not 1.

Not sure those diagnoses got corrected or not, but chances are the numbers from 2002 were impacted by that.

None of these issues had anything to do with Autism Speaks, they are just reporting government statistics, and reflecting the same concerns that the government here uses to illustrate the need for research, but common sense dictates that some of the increases in statistics are associated with the gray areas of diagnoses associated with PDD NOS.

The 1 percent recently measured in adults in England, to me, indicates there is at least an area of doubt for any signficant, actual increases, in autism in the last couple of decades.

Instead, potential increases as a result of changing diagnostic definitions, awareness efforts, and methods of measuring diagnoses that have been limited, in the US, to 8 year old children, in the education system for developmentally delayed children.

Whatever problems exist in real people's lives still exist regardless of statistics, but it seems it was clearly time to put any mention of epidemic to rest, considering these factors.

My suggestion that Tambourine man said is an area autism speaks is already focusing on, would be to screen the adult population in the US, to get an idea just how much the numbers are actually increasing.

I really don't think they are implying this any longer. They sponsor Autism Talk TV. I've written several articles for them. They've never censored me, and I've openly condemned some of their past actions on their own website.

They have allowed me to speak out about Neurodiversity and the meaninglessness of a cure on their own website. They have allowed me to share my struggles and my success. Alex and I have spent time hanging out with Marc and Peter and they are both very nice guys.

They are growing and learning and changing - like all of us. Their viewpoints have changed over time and they are moving forward.

They put a great deal of emphasis on this new direction at the Hackathon, and if they continue in this direction they will be doing themselves a big favor.

If they go back to the "I am Autism" and "Autism Everday" style of marketing they will really be shooting themselves in the foot. They aren't stupid - they know this.

We will see what the future holds.

Its a question not an implication in this case, I am not being disingenious. Feel free to answer yourself.

^ All of which plainly show that Autism Speaks is not "bashing" autistics, nor discouraging their voices. If anything, it only shows that AS was grossly misinformed of what autism was in the first place, and is now taking measures to reflect the wide array of perspectives that exist within the broader autism-related community, specifically, those of self-advocates.

They initially used a "disease" and "cure" model to convey their messages, but once they were given the message that this stance offends a good portion of the autistic population, they are now slowly adjusting their mandate to accomodate this perspective. The mere fact that they are letting Tambourine-Man speak out is a step ahead in itself, for I (and perhaps many others on the spectrum) originally assumed that they were strictly against the idea of autistics themselves becoming a part of their organization.

As for the future, I would highly recommend that they include people with autism in all levels of their organization. Having John Elder Robison supporting them is a start, but if they were truly concerned about the well-being of people with autism, they should start by taking a more inclusive approach by hiring and soliciting input by the people who will be directly affected by their efforts.

Well, said. I fully agree.