Ending the "epidemic" epidemic...

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I recently emailed Dana Marnane suggesting that she change a quote in her website bio that some members here were offended by. She was happy to make the change, removing a reference to autism as an epidemic and replacing it with...




I think this represents progress. I would appreciate it if you guys would use this thread to express your approval (if you approve). This may be a small victory, but if this one change gets a positive response, there are sure to be more changes made in the future.

I understand that one word will not inspire immediate forgiveness, but if you guys could please concentrate on this one little victory, we may see more such changes in the near future.

However, if everyone responds with the same old criticism, Autism Speaks may feel that this is a lose/lose situation and keep doing what they are doing. I, for one, am thrilled that this change was made and am very eager to see more such changes in the future.

congrats to you. its a word though. i'd like to drive deeper at some of the eugenics programs autism speaks has.

True, it is just a word, but it is a start, and it shows willigness. First comes a word, a with the right push, it will snowball...

i'll watch for the snowball then. how quickly should it come and what are the big indicators?

Unfortunately, it won't come all by itself. We have to keep it rolling. That is why I'm hoping people will contribute to this thread.

Okay this one, is a big request. I'm not even sure if anyone else will see the benefit of it, but it I think one of the first steps to increase awareness and understanding of autism in the adult population, in the US.

England screened for autism in the adult population and found the numbers in it equivalent to childhood cases, at about 1 percent.

My suggestion is for autism speaks to support research like this in the US.

A great amount of collateral information could be determined as well, as far as what they are doing in life that is working for them and not working for them, that could help other individuals with autism as they move into the adult population, here in the US.

Many of my recent conversations indicate that this is, indeed, a major part of Autism Speaks' future direction.

Small victories are great!! Many small victories sets the foundations for big ones. Congrats Tamborine Man.

I'm glad to hear that. There aren't too many privately funded research organizations for autism like Autism Speaks that can make it happen in a reasonable amount of time. The government has this goal in the combating autism act, but government iniatives tend to move slower than the private sector.

The goal was identified since 2006 in the government plan; part of the review of progress indicated that they needed to focus more in this area to accomplish the stated goals.

I might of stated it before, but I see that they have new research aimed at studying gastrointestinal problems and autism; it seems like that is an area, that stands a good chance improving.

I know that everyone wants to see more support and services aimed at the adult population, but I think the first step is to enable the identification of who it is within the adult population that has autism. It may provide more incentive for people to support funding for it once they understand the numbers that are impacted.

I can't really think of anything else at this point that could probably reasonably be achieved, but I am sure there are others that can think of specific needs of autistic people that autism speaks might be able to fund in the future, that they may not be aware of.

I remember another thread where someone mentioned funding service animals for autistics, and communication devices. It seems like the hacking autism project is taking care of that part.

I noticed too, Aspie48's comment that it made him nervous that he thought someone might be wanting to hack inside his mind. It just shows I think how important it is to carefully choose marketing language, in consideration that when people use verbs along with the word autism, that autistic people tend to see it as action against them instead of action against the associated conditions of autism that need to be addressed with potential solutions.

I'll have to admit it's a catchy phrase not easily forgotten. It seems like a great program.

When I first heard the phrase I thought of the stereotype that people with aspergers are good at hacking computers, and immediately thought of Gary McKinnon. I guess because I see that name around here so much.

So presumably, one out of a hundred adults in the U.S. is on the spectrum?

In many ways, this is actually a big victory, because the word "epidemic" has so many negative connotations. This is a good first step.

Thank you guys for being so positive!

Finally, something. I wonder what it originally said though.

The original quote is no secret. It said something like, "With increased awareness, we will end this epidemic."

Dana was just using words all too common to the autism vernacular. She meant no offense. When she was educated as to the offensive nature of the word, she made a change.

This represents a willingness on the part of Autism Speaks to listen to the voices of autistic people and take their suggestions to heart.

I'm am very pleased with the prompt and cooperative response.

I appreciate the changes


From recent conversations on here, I am starting to feel slightly more friendly toward Autism Speaks. This encourages me and my husband to try to be more active in my community since I live somewhere that is pretty backwater and really doesn't know anything about autism/AS at all and there are few to none psychiatrists at all. They could use a few vocal high-functioning autistics to tell them what's up.

If this is true surreptitious changes in language would mean much. I know what power the hidden meanings of words have on NT's opinions. This seems to appreciate that. As I said: Finally, something.