I AM CONDUCTING AN INTERVIEW WITH AUTISM SPEAKS

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Sorry, I just read a bit of your blog that strongly suggested you hadn't too, if I had seen that before I wouldn't have mentioned it.

I also realised that you have overcome problems with less formal drugs in in the past, which I didn't know - no wonder you are so defensive - but, let me make it clear, to me, those are two very different things.



You do realise that the Adderall probably exacerbates the anxiety and racing thoughts? No judgement here, if somebody gave me a script for Adderall, trust me, the only way to get it off me would be to prize it from my dead fingers - but still, worth looking into?



Sorry but I would rather see any young person have real happiness than a chemical reaction in lieu - so sue me.

That's really amazing! So, I take it that you took up music in a big way in your 40s? Good for you.

And actually, we humans, whether on the spectrum or not, are so creative that this kind of thing happens all the time. A lot of it is just a matter of going with a good thing. And maybe coaxing ourselves, but not trying to force ourselves.

Thank you. I started playing the piano at 12 by sheet music, and continued throughout my life always wanting to create and never being able to do it, no matter how hard I tried. At about age 45, it just started flowing out of my fingers, I put the sheet music away and never looked at it again. Finally, the music I made belonged to me. There are so many amazing things about being human; For me it was like a miracle, to be able to experience that.

I've submitted the article and it will be up as soon as an administrator approves it!

Well I have seen the article now ( http://www.aspiesforfreedom.com/index.php scroll down...for those with short memories).

Just uses the questions a a springboard for more of their usual PR bumpf...

What an anti climax for you birthday. I am so sorry...it was predictable.

Honestly, the best anyone of us will ever get out of Autism Speaks is a little paid work...as long as we are prepared to sell out all self respect, autonomy and integrity.

It was a valiant try.

Anyway, just because something is big, rich and powerful doesn't mean it is right or worthy, as a matter of fact, au contraire, it it usually means it is corrupt.

Great article. It appears that we once and for all can put the funding for research for the prenatal test question to rest, by their answer that they are not funding one. My understanding before was that at one time it was a goal from a previous response from Autism Speaks; they publically state now that it isn't; that in itself I think may make some people feel more comfortable in general, regardless of whether or not their opinion of the organization changes.

They admitted mistakes in their actions that have been taken as offenses towards others and apologized for it. That has been a current theme, here, as what was seen as a necessary action, and now there is a public apology.

They clarified what they mean by cure, as not one of eliminating the autistic, but helping the autistic with symptoms associated with Autism. That too seems like a major clarification, that is not an unreasonable one, I think.

Regardless of whether or not this changes a person's opinion of the organization itself, these three concerns have been a major source of heartburn for many that can be put to rest, now that Autism Speaks has made it clear what their position is.

I think it would be great if you could copy and paste the article here, for the record for others to see, if that is allowed, so it will be available here for future reference for others to see, in case, it is not available for view at AFF in the future.

The only thing I noticed, that I think might disappoint some, was that they did not respond to the question of why autistic people might disagree with the research that they outlined in their response. The research all seemed of specific benefit to Autistic people, so perhaps that was why there was no response there.

Hopefully if the dialogue continues suggestions can be presented to the organization, of new ways to improve the lives of Autistic people. Apparently, they have been paying attention to some of the mosts important concerns that have been voiced in the past, and it seems that they have responded in a positive way to them.

Your efforts are appreciated, and bring me a clearer picture of the organization than I had before. Hopefully it will bring that to others as well.

I see the results of your efforts as an extremely positive one.

The folks at AFF helped come up with some great questions.

Great job!

Thanks ahogday! I included a link and teaser in another thread. Hopefully people will notice it!

Now we can "put the question to rest"? Really? Because of something that a high-ranking Public Relations person said?

Some of us are not so easily satisfied with response, nor with the vague "apology" for previous (unnamed) "mistakes."

While I appreciate the work and thought Tambourine-man put into this, I am not exaggerating when I say that I could have predicted most of these responses.

If the reason given here is truly the only reason why so much money is being spent on genetics, I have to seriously question the emphasis on it. Is there even any evidence that genetic sub-groupings correlate with particular expressions of autism, in the way that Autism Speaks is defining it? That remains to be seen. I found the example she gave unconvincing (as someone who has significant problems with insomnia). Genetic research is not the only way or even the best way to approach various problems like that.

Your welcome.
.

Nonsense.

Your overly-generous interpretation is unbelievably naive.

My interpretation is that Autism Speaks is lying.


He spoke to a PR hack. Nothing that they say is to be believed.


Nah... it has to be sincere to be a real apology.

I don't accept their 'apology' as sincere, think it is utterly self-serving, and regard them as demonstrated liars.


They are playing word games. They have to say something, because it is increasingly evident that a real cure for autism is not in the cards, and because they know many of us won't accept their goal of autist-prevention.

I don't accept that this is their real position, and I'd bet that they'll say other things to other audiences.


I do not accept their statements as truth - I think they will say whatever they think they need to go get us off their backs.

Do not trust Autism Speaks.


Nice apologetics on their behalf.

I would not make any generous assumptions regarding their motives.



I'm quite sure they have some people monitoring the internet, including this site.


I'm afraid he has allowed himself to be used by a nasty organization to the detriment of autists everywhere.

I would imagine that is exactly what Autism Speaks expected...you have to remember these people work on a very deep seated premise that we are their intellectual inferiors that no amount of evidence to the contrary seems able to shift.



Too right "I am sorry if I have ever hurt your feelings in any way" is one of the oldest gambits in the book. An apology is nothing but an empty formality unless it specifies it's subject AND and offers to make real amends.



You and me both...that's why I am so disappointed for T-M...they could have spared him ONE MEASLY groundbreaking response without really giving anything away at all...but no...it was too much to ask.

More important to act like they are doing a monumental favour by using him as an excuse for yet another burst of corporate propaganda.



Well here is another insomniac who found it equally off colour...

Sometimes I feel as if the generic research angle is the biggest red herring of all, because, lord knows, if all that was shut down tomorrow there would still be plenty more excellent reasons for having nothing to do with Autism Speaks.

The response was an official one by an individual that is employed by the organization, to respond to questions from the general public. The response to the prenatal test question appears to be a different one than in the past, that was presented here by those that represent the organization; if they were willing to admit it as goal before, and state that it is not a goal now, that is indicative of change to me, and even reason for applause for those that have been against Autism Speaks funding for research into a prenatal test for autism.

Their apology seemed sincere to me, I suspect some will see it as sincere, and some will not see it as apology enough. I suspect if you emailed the organization and detailed the specific offense that you sought an apology for you would receive it, but it doesn't seem likely the organization could possibly detail everything they have done seen as a mistake they have made and every offense taken that others have seen, so acknowledgements of all mistakes made and all offenses taken seems like a reasonable approach to me.

The reasons they gave for genetic research were examples they stated that were part of many more. While there may be better ways to pursue issues with insomnia, they are pursuing insomnia issues specific to Autism, in that regard genetic research is a valid one, as it is with bowel disorders and children with regressive autism.

Sad to say...all of the above works for me...always has, always will...


But I want to do something nice for John Holman's birthday instead anyway:

[youtube]http://www.youtube.com/watch?v=oVuVXqWfQeE[/youtube]

Happy Birthday kid...and don't worry...once you hack the first quarter century the rest is mostly down hill.

If you state that the individual that provided the answers, who is a high ranking officer in the organization, is a PR hack that is not to be believed, it is a personal attack on that individual, not the organization, and is not a warranted statement in the context of attempting to understand the content of the conversation.

Beyond that you have presented no evidence to my knowledge that this individual that you are personally attacking has done anything to deserve the reputation that you have bestowed on them.

You state you regard the organization as demonstrated liars, which is another personal attack on the individuals you regard as demonstrated liars, yet you have presented no evidence to my knowledge that individuals in the organization have lied about anything.

I see the need for reasonable discourse on the content of the conversation, but I don't see the need for personal attacks against real live people, without evidence to support those attacks. People value their integrity; there is no need I see to bring personal attacks into the equation, unless specific evidence warrants it.

I see all of your other statements here as non-objectionable personal opinions.

I'm quite sure that you do.

No organization like Autism Speaks, which is very good at fund raising and very bad at autism 'advocacy', would tolerate a person who is speaking on their behalf who is not delivering the party line.

The individual who Autism Speaks has selected to speak for them does not matter individually, for they will be saying only what the organization wants to be publicly said to the specific audience that they are targeting.

The answers in Autism Speaks's response are consistent with the deliberately untrue and misleading statements that I was expecting from that organization. I was expecting things that are not true from them, and that is what they delivered.

I think that there is a great deal of evidence that Autism Speaks has not been telling the truth and has not been serving the autistic community.

They have angered me enough in what I have read about their behavior that I will be spending time over the next few years to gather together and vet evidence that they are scoundrels.

I think that Autism Speaks is one of the worst things that has happened to us, and I am intent on helping people to learn accurate and truthful information about the organization.

Whether to work inside s system or outside is a major question. And I tend to think the answer is, a little bit of both? Sometimes one, sometimes the other. Being aware of the limitations of both ways.

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I've been reading the answers

And I've got to tell you, I'm just not that impressed.

This thing is stiff, formalistic, corporate throughout. And even this part " . . . to help them adapt to the world . . . " Well, excuse me, but I'd also like the world to adapt to me. That is, I think we can take a page from the movement for civil rights for gay and lesbian persons, or any of a number of other movements for civil and human rights. We can help the world become a more open place and accept a broader range of what is considered 'normal.' And we can also build communities, organizations, activities, events, that are more accepting within the world. For example, I'd like to see us start productive businesses with the purpose of making money and creating good jobs. Not just any jobs, but good jobs (even fully aware that 80% of new businesses fail, straight up, that's the baseline, often because fixed expenses eat you alive before sales really come in).

Last edited by AardvarkGoodSwimmer on 20 Sep 2011, 9:50 pm, edited 1 time in total.