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I see you are, once again, promoting the Autism Science Foundation and its agenda driven “research”.
Harold L Doherty,
take out “agenda driven” and take out the scare quotes on “research” and you are almost accurate. For one thing, the ASF doesn’t perform research. I am pretty sure you are aware of that and likely your statement is just a vague use of language.
Do you have a problem with the research they have funded? You were commenting recently on a thread about one researcher ASF is funding. She is working on a treatment for a specific ASD. Is that somehow “agenda driven”. Here are a list of recently funded projects:
Can I assume from your criticisms that you somehow oppose those projects?
Matt,
I can’t speak for Harold, but I have a problem with a pharma front group posing as an autism charity and anyone who would take money from such a group, including you.
spread the word. Continue to support the research.
[Sullivan say] Can I assume from your criticisms that you [hld] somehow oppose those projects…
COMMENT
dont know about hld…and i dont know enough about the projects to be pro/con..in general, my opine: the funding scales are tipped to publish or perish crew projects vice the programs that support/improve today’s quality of life for those on the spectrum…
how do these projects improve lives today…as someone said, “in the long term we are dead.”
this opine probably posted elsewhere on LBRB…apologies for ad nauseam repeats.
stanley seigler
Harold, you’re making me rather angry with you. As one of the ASF funded scientists, I take serious offense to the scare quotes around the word research. I’d gladly take the time to explain what I’m working on to you so you can be convinced of it’s rigorous nature and validity, if only you would ask rather than hyjacking every post on here that relates to ASF.
@ Stanley,
Other than the fact that all research has lag time between discovery and policy implementation, I actually thunk a lot of what ASF is funding will rapidly become relevant. My project, while based on genetics, is actually a hunt for therapeutic targets. There is another project that discussed the disproportional amount of out of pocket expenses that ASD families pay compared to other disabilities, which will have funding policy implications. Overall, I think ASF does an excellent job of supporting diverse forward thinking research. (yes, I’m biased, I know, but, my work and background in genetics aside, I find that ASF funds some of th most interesting non-genetic studies as well (which is impressive, since they don’t give the big grants that larger organizations do)
Correction (also, excuse my many typos in the last comment plz!): the study I mentioned in my comment to Stanley was done by one of the groups funded, but was not itself funded by ASF this year. (though I’d have to check and see if they gave support last year. However, the work they’ve funded in the mandell lab this year is also relevant to helping people currently on the spectrum.
[Christie Buchovecky say] … relevant to helping people currently on the spectrum.
COMMENT:
how
research needed…but so is support of those on the spectrum.
stanley seigler
Christie, ignore Harold, most of us do.
Christie…
“Harold, you’re making me rather angry with you. As one of the ASF funded scientists, I take serious offense to the scare quotes around the word research.”
He’s just in his twat-face mood. Which is where he is 100% of the time. You have to bear him mind that he’s a ‘lawyer’, so he thinks that everything that he doesn’t agree with is ‘bullshit’ or ‘questionable’. Really, what’s questionable is the bullshit he never ceases to come out with.
As other have exhorted, so do I: ignore him, unless you can really do something to upset him. Then upset him, sit back, and watch the fire. Make sure you got popcorn!
bear in mind! oops …
@Sharon and David,
Don’t worry, I’m pretty thick skinned. I was just hoping that pointing out to Mr. Doherty that there are real people on the other end of his rants might make him stop and think about what he wants to say for an extra few seconds.
@Stanley, your point is well taken about support (financial and otherwise) being needed for the ASD community as well as research and political and social advocacy. But I dont think every organization has to do every aspect. You have the right to financially support and promote those organizations that are best doing what you think needs to be done, just as Sullivan has the right to support the organizations he favors (he just happens to have a rather large platform). Personally, I think these national organizations should be more about research and advocay/awareness than direct support, as social support is best given by local groups and (IMO) financial support for many necessary services should come from government at various levels (I recognize that this is a political statement).
And you asked how what ASF is relevant to those currently on the spectrum – off the top of my head:
1) funding the search for new pharmasceutical treatments, the aim of which is not to “cure” or prevent ASDs, but to treat comorbiddites and improve quality of life.
2) funding research into the most effective techniques for teaching kids with ASD in a classroom.
3) advocating government programs to prevent tragedies related to wandering
4) publicly denouncing scientifically unsound and potentially dangerous treatments
[Christie Buchovecky say]… I think these national organizations should be more about research and advocay/awareness than direct support, as social support is best given by local groups and (IMO) financial support for many necessary services should come from government at various levels … off the top of my head
COMMENT
good off top of head points…asking does a research project meets your points/goals would be a start in determining research priorities…ie, a set of criteria to determine if research actually does/will improve quality.
research and direct support not mutually exclusive…that said and to repeat my opine…funding scales are tipped to funding research project vice direct, daily support…
“social support is best given by local groups and (IMO) financial support for many necessary services should come from government at various levels ”
when will SHOULD support be replaced with DO support…many direct care programs are staffed with many who couldn’t get jobs as burger flippers…this puts the consumer at risk and reflects poorly on compassionate, dedicated, staff.
an example of funding
Autism Speaks will fund genomics and proteomics studies through a set of new grants announced this week totaling $5.2 million.
http://www.ageofautism.com/2010/04/autism-speaks-to-fund-52-million-in-genetics-studies-for-early-biomarker-diagnosis.html
Autism Speaks Baker Summer Camp Program will select eligible camps to identify scholarship campers and offers up to $3,000 in scholarship funds for campers with Autism Spectrum Disorder to attend a summer camp. [330 campers, $990,000]
http://alaskaarc.org/2011/02/autism-speaks-baker-summer-camp-program-2011-scholarship-fund/
$5.2M v $990,000…probably not a good example…but hope the point is understood…and
support woefully inadequate for adults…eg;
[Kassiane say] “I guess if you’re 26 or over, you’re out of luck. Great progress there.”
it’s 22 or over in CA USA.
and most group homes are mini institutions (modern day snake pits)
stanley seigler
Stanley: “when will SHOULD support be replaced with DO support…”
That’s a question I still have no answer for after 12 yrs of waiting for my local town and my current state to get their arses into gear and get into this support thing. I suppose the only correct answer is: when the lazy and stingy bastards all die out and are replaces by responsible people in authority.
In other words… never.
replaces -> replaced*
Hiya Christie…
“Don’t worry, I’m pretty thick skinned.”
Good to hear.
“I was just hoping that pointing out to Mr. Doherty that there are real people on the other end of his rants might make him stop and think about what he wants to say for an extra few seconds.”
Sadly, even though it would be good for him to realise that, the truth is that he never will stop and think. He does, of course, criticise others in this respect without thinking about his own behaviour. I put it down to his being a lawyer and allowed too much leeway by pathetically sorry Canadian court-room judges/magistrates.
“4) publicly denouncing scientifically unsound and potentially dangerous treatments”
This appeals to me greatly.