Sunday, April 13, 2008

Tales from the Darkside

I've been somewhat out of touch the past few days...cyber-speaking anyway. My wife and I got to do yet another excursion ALONE for the weekend, with yet another fun-filled autism related conference. First, to business...no children were lost, harmed or psychologically damaged this weekend...nor were the two people watching them. The parents nearly had a coronary when we had called and found that my brother-in-law was left in charge of the two girls and boys while grandma and our oldest daughter went to Shop-Rite. Lucky we called when we did..we walked Dillan through taking Liv to the potty. I got to listen to a great female version of Bob Newhart:
"OK, now slowly take down her pants, she might have poop...nonono, she probably doesn't, just in case. OK, good...now have her sit on the potty...don't let her flush again till she's done. Let's hope she doesn't poop...Nevermind what you'll have to do, just listen. OK, she peed, now give her some toilet tissue...I dunno, like 3 or 4 pieces...no all together...now give it to her...OK now she CAN flush the toilet."
Suffice it to say that we would have had Comedy Album of the Year had there been poop...
Meanwhile, mom and dad were at...the DAN! conference in Cherry Hill NJ. This was Linda's 3rd or 4th, it was my 1st conference.
I did not hear as much anti-vaccine rhetoric as I expected. I mean there was an undertone, but much of the venom was pointed at environmental factors in general. Then again, we did take the 'science' path and not the 'parents' path.
First, I found Dr Paul Shattock and his 'rock star'/comedian attitude a complete turn off. He may be one of DAN!'s best communicators, but I did not find anything valuable in his message. The two that most impressed me were Dr Derrick MacFabe and his talk on "Can Acquired Infections Influence Brain Function and Behavior in Autism" and Jill James and her work with the Arkansas Children's Hospital Research institute.
Dr MacFabe's research somewhat mirrors The Wakefield idea of Digestive bugs causing some behavioral issues. It's not really the concept that autism=gut issues, but more that he's taking the path that some autism issue amy be related to specific gut issues. It was his thought process and honesty that struck me...
Dr Jill James (WHY DO I ALWAYS WANT TO WRITE JILL ST JAMES..OR IS IT JILL ST JOHN FROM THAT 70'S MURDER MYSTERY) impressed me with her honesty with her data and how she needs and is seeking a more solid study, for some of her theories. I also liked her attitude about collaborating with the AAP about autism issues. not necessarily showing them how it's done but helping them understand some of the medical issues involved in the autism spectrum. I also liked the idea of the ATN Autism Treatment Network where they combine the experts in developmental pediatrics, neurology, genetics, metabolism and gastroenterology in 15 sites across the country to dedicate themselves to the standard of card of children of autism. To quote "The ATN believes that treatments of medical issues will improve core behaviors and quality of life for children and adults with autism"
I really had some problems with some of the disassociation DAN! has with the 'realities' of autism, there was not much mention of therapeutic or even acceptance of autism (and again, I didn't set foot in a parents forum) but I found at least some to many of the doctors presenting to be concerned with the real life of autism and definitely looking at the disorder as a fragmented and treatable from a MEDICAL standpoint but NOT as a medical condition, standpoint. I know that many see DAN! as a group that looks to profit from autism, but from my point of view, many in the organization are really looking at autism holistically, and not from a strictly medical, biomedical, therapeutic or genetic standpoint.

7 comments:

kristina said...

I guess you mean the DAN!side---thanks for the overview and commentary.

Alyric said...

"The ATN believes that treatments of medical issues will improve core behaviors and quality of life for children and adults with autism"

Well duh! but does that include a tacit acceptance of 'leaky gut', depleted glutathione or any of the vast array of largely unproven but suspicious biochemical theories out there?

As for the honesty of Jill James and Derrick McFabe. Well Jill James when queried on the the p values (statistical significance) of her glutathione values of autistic children by the IOM took refuge apparently in a method, which was more likely to give her statistical significance than not. Derrick MaFabe was the researcher who injected corrosive levels of propionic acid directly into the brains of mice and wanted to call the resulting movement disturbances and seizures autism.

I'm sure they were very nice and persuasive people and and thanks for posting the experience.

Camille said...

Livsparents, just in case you missed this point, what DAN! is is the outfit set up the situation that killed Tariq Nadama. Kerry was follwing the DAN! thinking and Tariq was referred to him by a DAN! doctor, Anju Usman

Then DAN! opened their arms and lovingly accested Kerry in as one of their own after he murdered Tariq.

I don't think this garbage, no matter how nicely packaged by you Livsparents, belongs in association with the hub. It's a travesty that a hub blogger would promote any part of DAN! so long as Roy Kerry is still a DAN! quack in good standing and so long as DAN! promotes sick levels of quackery and the torturing of children with IV chelation and toy HBOT bags and mountains of untested pills that the many of the kids are asked to choke down each day and the EDTA suppositories that can destroy skin being put inside them.

Sure maybe there's even one legitimate thing said at a DAN! quackfest, that doesn't mean we need to hear about it so long as they promote potentially deadly quackery. It's not appropriate for the hub, in my opinion.

LIVSPARENTS said...

alyric, I really don't know if they are promoting anything other than solid medical care for autistic children. The 15 locations in the network don't exactly look like nutraceutical clinics:
http://www.autismspeaks.org/docs/sciencedocs/ATN_One_Sheet.pdf
(Sorry about the blaspheming link to AS)
One of my passions is the lack of understanding in the mainstream of the potential medical issues and the need to properly train doctors in the diagnosic nuances of autistics; if ATN gets us closer to that...so be it.

Camille- I'm getting the feeling that I'm going to be a tough sell for you. My daddy always told me about the four types of people in this world: like you for the right or wrong reasons; dislike you for the right or wrong reasons. So far, I don't think I have to worry about you yet. If I offended you, I appologize, but this is my life; I think I've seen a handful of other bloggers talk about their experiences at autism conferences. I thought I'd give an unvarnished view of what was going on there; if I gave a 'glass is 1/4 full' view, that's just me...

Alyric said...

"One of my passions is the lack of understanding in the mainstream of the potential medical issues and the need to properly train doctors in the diagnosic nuances of autistics; if ATN gets us closer to that...so be it."

I know what you mean and it's that important as in grass roots essential. I had this kind of problem when I wrote to our GP organisation - family physicians in this part of the world, well the part of the world I used to live in, which is not Australia at the moment but was when I wrote to that organisation. Do I have you thoroughly confused yet? Anyways, the GP organisation was offering further education credits for GPs attending a DAN conference. The offerings were prominently chelation and nutriceuticals, both of which have done harm to autistic children and we really don't know how much these children's lifespans have been shortened by these regimens. Maybe they'll develop cirrhosis of the liver or need a kidney transplant when they're 25, who knows because the folks promoting this sure don't. But this 'selling point' is marketed to parents under the guise of educating physicians about autism. I don't think so, not in the way that we mean, which is educating doctors into the meaning of autistic behaviors so that they don't miss out on necessary medical treatment because this MD thinks that all 'acting out' is just autism rather than pain or something else. I suggested to our GP organisation that they get a real course going through the university which has some of our prominent experts. They wrote me a nice letter, and it wasn't pro-forma (having written a few hundred of those myself:) and basically they were going to look into it. The DAN merry-go-round looks like a marketing exercise to me. Using 'education' as the rationale is just window dressing, but then I'm unusually cynical this week. It could be that dh is in Vancouver and I don't sleep well because the bedroom furniture, which includes dh, has been rearranged or it could be that I've had it up to the green gills with all these self-serving, money-grubbing, attention seeking folks out there claiming to be doing great things for autism and they include Kirby, Olmsted and Bernadine Healy.

LIVSPARENTS said...

The way I view DAN! is that they are filling a vaccuum. Being in business I look at how to beat DAN! is to offer a better product. In assisting with the ATN, DAN! may be inadvertantly creating it's own demise.

We have a great local organization called Parents of Autistic Children (POAC) which provides training for both barents and schools in therapies. I would seem that we need something similar for doctors to go through so that they can get properly sensitized to the autistic condition.

Jill James made a lot of the AAP's Nov 2007 guidelines for treating autistics, saying that AAP's finally 'catching up'. If she would have read it thoroughly though, she would have realized that Dr's are told to NICELY steer their patients AWAY from the likes of DAN!...

Alyric said...

"We have a great local organization called Parents of Autistic Children (POAC) which provides training for both barents and schools in therapies. I would seem that we need something similar for doctors to go through so that they can get properly sensitized to the autistic condition."

That would be a good thing, I think and maybe there are local doctors' organisations that might be keen to help by showing up:) Remember the thing jypsy organised to get law enforcement folks on PEI educated? Now, that's a role model. Maybe you wouldn't need to bring in an expert if POAC has someone who could do the talking.