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DAN! (Defeat Autism Now) Is No More

By September 2, 2011

Apparently I'm very late to the party on this big change, which was announced in January, but it appears that the Autism Research Institute will no longer promote an autism treatment called DAN! (Defeat Autism Now).  In addition, ARI will no longer host the DAN! registry of practitioners.  Dr. Edelson of ARI kindly pointed me to this information on the ARI site's newletter:

Because the name "Defeat Autism Now!" does not accurately describe the medical approach to understanding and treating autism, and because some people have been offended by the phrase, ARI will no longer use the name.  (As one person with ASD wrote, the name feels like a "personal affront, that I am not good enough as a human being, and that, because we are not neurotypical, people with autism need to be defeated.")  Furthermore, the Divers' Alert Network owns the copyright for "DAN!," and they have requested that we no longer use it. In the future, our biannual Conferences will simply be called ARI Conferences....

We have resolved to "freeze" the clinician registry in 2011; at the end of the year, the list will be removed from our website.  There are many reasons why we have chosen to do this: although clinicians receive similar and consistent information at the seminars, there is no uniform way patients are subsequently treated, even acknowledging individual differences; many perceive the clinician list as a list of recommended doctors--in reality, the list simply contains the names of professionals who attended our clinician seminars.  We do not certify them, and as a result, we cannot assure people that every practitioner on the list always provides the highest quality service.  We do know that families need a way to locate quality practitioners in their community, and we have added a page of advice on that process to our website.

I will be updating my articles on DAN! to reflect these changes; meanwhile, however, you can read about the approach as it was - though, presumably, there will be signficant changes to come.  The newsletter suggests, for example, that ARI will be focusing more attention on nutrition, sensory issues, and the needs of adults with autism.

Comments
September 2, 2011 at 4:59 pm
(1) Karen Freeman says:

First, I have always enjoy your column, Lisa. I may not always agree with the contents but I respect your writing style and compelling stories.

As for the DAN! group, I believe that in order for both the ‘conventional’ and ‘non-conventional’ groups to blend ideas there needs to be a breaking down of walls. Without questions, there has been a lot of bad blood between the two camps and we need to have research groups that reflect a more ‘diplomatic’ style in diagnosis and treatments for those on the spectrum. The significant boundaries that have been created over the years haven’t help anyone – least of all those who have ASD.

September 2, 2011 at 7:20 pm
(2) Louise says:

Please get your fact right and leave you opinion out of your article. The change in the Dan! Clinician registry has nothing to do with not promoting it. Completely researcing your article prior to publishing on the internet is the correct way to write an article.

September 2, 2011 at 8:34 pm
(3) Matt Carey says:

One might say that completely researching therapies prior to testing them on disabled children is the correct way to do things. Unfortunately, that was not the DAN approach.

Given that there is no single “DAN” approach (as noted by Mr. Edelson), how can they promote “it”?

“there is no uniform way patients are subsequently treated”

September 3, 2011 at 10:41 am
(4) MJ says:

“One might say that completely researching therapies prior to testing them on disabled children is the correct way to do things. Unfortunately, that was not the DAN approach.”

That is an exaggeration.

The approach formerly known as DAN might have sometimes gone to some extremes with treatments like chelation, lupron, or hbot but it also pushed more mundane, everyday treatments that do have scientific backing.

There really is something to the idea that some children with autism do have biological imbalances and that treating these imbalances can greatly help the child.

Unfortunately, most “mainstream” doctors won’t even look at the biological side. So the trick is to find a credible medical professional who is willing to treat each child as a person and look at what they specifically need rather than take a one-size fits all approach.

September 2, 2011 at 8:57 pm
(5) Amy Caraballo says:

Lisa simply posted the except from the ARI Newsletter. I don’t see how that could be her “opinion!” Perhaps you misdirected your anger?

September 2, 2011 at 11:04 pm
(6) autism says:

Amy: you’re correct. In this case, I simply cited what was in the newsletter. I don’t know what Louise is writing about, or what her frustration is.

By the same token, though I didn’t express an opinion in this case, I often do. That is, in part, the purpose of blogging.

Lisa

September 6, 2011 at 6:18 pm
(7) Summer Smith says:

I am thrilled by this change. I am hoping by doing so, the process of treatments for autism can be more effective for the diversity of the condition. The lack of training DAN’s have/had really disturbed me. Not all kids have Gut and Yeast issues, but that seemed to be the staple DAN’s went by. I personally think it was more of a marketing ploy and a way for these Dr.’s with little training to make some money. This is why they were continuously suggesting the same treatments across the board to most all patients, because they have very little personal experience with bio-medical treatments. I am not talking about all dr.s who did DAN treatments, but a vast majority of them. I never got sucked into it. But… I hope this is only a sign of many good things to come for ASD.

September 7, 2011 at 4:23 pm
(8) Ken says:

Exactly. And let’s not forget that Roy Kerry became a DAN! practitioner only after he killed a five-year-old boy. So when Edelson says there is no way “to assure people that every practitioner on the list always provides the highest quality service” he can point to the Kerry episode as an example.

September 3, 2011 at 9:18 am
(9) Stuart Duncan says:

Baby steps… positive, baby steps.

September 3, 2011 at 9:23 am
(10) Ilene says:

Personally, I’m THRILLED by this change. My opinion of the whole DAN! system (doctors and philosophies) is very poor as my feeling is they are a bit of sensationalist group.

All the DAN! Doctors that I’m aware of (and I’ll admit it’s a VERY limited sample) refuse to accept ANY insurance (even if the insurance coverage is available) and charge $300 or more for a visit where they simply say, come back later and we’ll do more tests (for more fees). The families I know who have been to DAN! doctors haven’t gotten any helpful advice, suggestions of where to go, or non-experimental thoughts of what MUST be done (rather than what they feel may be helpful). Also as a group, they seem to refuse to look for the actual causes of autism rather than accepting existing research. Their methods can be considered dangerous for many and I don’t think they really care about solving the problems that come from autism. (can you tell I really LOATHE this organization?)

As the autism rate increases, more and more physicians are being required to learn more about this condition. Hopefully, with the lack of promotion by ARI, more people will seek out other physicians and more answers can actually be found.

September 3, 2011 at 9:29 am
(11) autism says:

What’s confusing to me is that this announcement was made in JANUARY – and neither I nor, apparently, my readers were aware of it. You’d think it would have made a big splash – or at least that ARI would have WANTED it to make a big splash.

Weirdly, Dr. Edelson was unhappy because I’d mentioned ARI’s association with DAN! in an earlier post. I knew nothing of the change until he told me about it, and I monitor google alerts for “autism” every day. He pointed out that the change had been mentioned in the Shafer Report, but let’s be honest: that’s hardly the New York Times!

Lisa

September 7, 2011 at 4:26 pm
(12) Ken says:
September 3, 2011 at 10:26 am
(13) Malia says:

The ARI post reads to me like this was brought about by an issue that has been forced due to some legal issue with respect to the name being registered by another group followed by the realization that the hype and sensationalism associated with the name itself was not as positive as they would have really liked… precipitated a change in approach that may ultimately be just administrative in nature and somewhat less of a change in overall philosophy than anticipated. It will be interesting to see what happens down the road.

September 7, 2011 at 4:32 pm
(14) Ken says:

The Divers’ Alert Network logo included the exclamation mark – DAN!. ARI is free to call its network “DAN” minus the exclamation mark. Given the questionable nature of ARI’s science, I would think DAN? would be appropriate. Or perhaps DAN$.

September 3, 2011 at 10:56 am
(15) Sandy2000 says:

Maybe it’s because many readers aren’t into that type of intervention? I seen it in the Shafer Report, but I’d imagine for various reasons no one wanted in the New York Times. In the statement, this was said “although clinicians receive similar and consistent information at the seminars, there is no uniform way patients are subsequently treated, even acknowledging individual differences; many perceive the clinician list as a list of recommended doctors” which leads me to Irene’s comments which partly cracked me up. Although many who attend those seminars are medical professionals, the protocol itself really isn’t all that medically-based, which might be why they wont bill insurances or if they do, they fraudulently submit claims of services never rendered like the doctor I contacted. What’s interesting is their office visit cost is right up there with the endo specialist my son had, who actually treated my son medically and insurance covered it. Although nutrition and nutrients is always a good thing, I doubt my son at the time he was diagnosed with autism lacked these things and honestly I had no idea Dr. Rimland core treatments also included such things as vitamin B6 and melatonin. I hope people choosing this intervention reads up on what they give their children since vitamin B6 has a toxicity and melatonin was never meant to be used long-term (more than 3 months) and I have yet to see studies which supports either use in relation to autism. Maybe some one can dog some up.

September 5, 2011 at 10:33 am
(16) Paige says:

Dev Med Child Neurol. 2011 Sep;53(9):783-92. doi: 10.1111/j.1469-8749.2011.03980.x. Epub 2011 Apr 19.
Melatonin in autism spectrum disorders: a systematic review and meta-analysis.
Rossignol DA, Frye RE.
Abstract
The aim of this study was to investigate melatonin-related findings in autism spectrum disorders (ASD). Method: Comprehensive searches were conducted in the PubMed, Google Scholar, CINAHL, EMBASE, Scopus, and ERIC databases from their inception to October 2010. Two reviewers independently assessed 35 studies that met the inclusion criteria. Results: Nine studies measured melatonin or melatonin metabolites in ASD and all reported at least one abnormality, including an abnormal melatonin circadian rhythm in four studies, below average physiological levels of melatonin and/or melatonin derivates in seven studies, and a positive correlation between these levels and autistic behaviors in four studies. Five studies reported gene abnormalities that could contribute to decreased melatonin production or adversely affect melatonin receptor function in a small percentage of children with ASD. Six studies reported improved daytime behavior with melatonin use. Eighteen studies on melatonin treatment in ASD were identified; these studies reported improvements in sleep duration, sleep onset latency, and night-time awakenings…. The reported side effects of melatonin were minimal to none. Some studies were affected by limitations, including small sample sizes and variability in the protocols that measured changes in sleep parameters. Interpretation: Melatonin administration in ASD is associated with improved sleep parameters, better daytime behavior, and minimal side effects. Additional studies of melatonin would be helpful to confirm and expand on these findings.

September 3, 2011 at 11:40 pm
(17) Twyla says:

Although they will no longer use the name “DAN!” and will phase out the list of practitioners for the reasons stated in the newsletter, ARI is still holding conferences such as the conference coming up in Las Vegas October 13 – 16, 2011

http://www.ariconference.com/Vegas/general.html

This is not the demise of the biomedical paradigm and biomedical treatments for autism. This conference continues to offer information on the gut, immune system, nutrition, diet, metabolism, mitochondria, microbes, in short “Autism as a Multisystem, Whole Body Disorder”. The newsletter says they plan to add information on sensory and behavioral interventions, and adult services, and more focus on nutrition, but it is not clear to what extent they are scaling back on anything else. The spring 2012 conference in NY/NJ is described on the ARI site as:

Spring Conference – NY/NJ
April 26-29, 2012
General Sessions, Science Sessions, & Practitioner Seminars, Early Childhood, School Age & Adult Issues, Nutrition
Registration opens early January 2012

September 3, 2011 at 11:53 pm
(18) SMH says:

As per her norm, Lisa Jo once again writes a completely biased piece without even so much as getting the facts straight. Even the title is misleading. Go figure.

September 4, 2011 at 12:19 am
(19) Sandy2000 says:

Interesting, even for me. Let’s break it down.
Lisa’s title “DAN! (Defeat Autism Now) Is No More” This is a true fact, per what we as of yesterday knew what DAN! was.
Lisa wrote “Autism Research Institute will no longer promote an autism treatment called DAN!” This is a true fact
Lisa wrote “ARI will no longer host the DAN! registry of practitioners.” This is a true fact
Lisa wrote “presumably, there will be significant changes to come.” This is a true fact
Lisa wrote “for example, that ARI will be focusing more attention on nutrition, sensory issues, and the needs of adults with autism.” This is a true fact.
That isn’t biased, that’s breaking down the important parts of the news letter. Just what facts were incorrect?

September 4, 2011 at 9:34 am
(20) MJ says:

The ambiguity comes from the fact that there is a difference between “DAN!” the brand and the treatment ideas that were used as part of the “DAN!” brand.

The brand is going away but the treatment ideas remain.

September 4, 2011 at 9:37 am
(21) autism says:

MJ – I THINK there will be some relatively subtle changes to the DAN! approach to treatment… it sounds like they’re thinking more “diet and nutrition” and less “lupron and chelation” – though I may be wrong.

Lisa

September 4, 2011 at 12:01 pm
(22) Sandy2000 says:

Mid way down, the news letter also says “Toward the end of his life, Dr. Rimland had some concern that we were losing sight of the core treatments, such as vitamin B6 and melatonin.” So it would ‘seem’ the ‘treatment’ idea’s had been changing to what they originally were. I have been researching many protocols over the years but I never knew melatonin was part of Rimland’s core treatments. The only reason why anyone would use melatonin would be due to sleep issues, not specifically core issues of autism.

September 4, 2011 at 12:21 am
(23) Babs says:

“but it appears that the Autism Research Institute will no longer promote an autism treatment called DAN!”

I was unaware that there is an autism treatment called DAN!.

September 7, 2011 at 4:39 pm
(24) Ken says:

It’s called “The DAN protocol”

What Is the DAN! Protocol, and What are DAN! Doctors?
Defeat Autism Now (DAN!) is a project of the Autism Research Institute, founded in the 1960s by Dr. Bernard Rimland. DAN! doctors are trained in the “DAN! Protocol,” an approach to autism treatment which starts with the idea that autism is a biomedical disorder. Specifically, DAN! doctors feel that autism is a disorder caused by a combination of lowered immune response, external toxins from vaccines and other sources, and problems caused by certain foods.

September 4, 2011 at 1:06 pm
(25) passionlessDrone says:

Hello friends –

A different, more organized structure is under development that will attempt to give parents more certainty in doctor selection.

- pD

September 4, 2011 at 1:12 pm
(26) autism says:

pD – do you have access to a press release or other info about the “new DAN?”

September 5, 2011 at 10:43 am
(27) Paige says:

If you go to their website, http://www.autism.com, watch the flash bit at the top, and click when it offers Dr. Herbert’s “Autism as a multisystem, whole-body disorder,” talk, I think you’ll get a sense of the direction they’re heading in. I went to the last conference in Atlanta. Very heavy on diet, vitamins, and a global approach, including ABA, etc. If you look at the schedule of their fall conference, you’ll get the idea.

September 5, 2011 at 1:19 pm
(28) passionlessDrone says:

Hi Lisa –

I don’t know of a link, but I did hear some folks discussing it at the last DAN conference in Atlanta. A more strenuous certification process is certainly going to be addressed.

- pD

September 4, 2011 at 1:35 pm
(29) Twyla says:

The title of this article is indeed misleading. “DAN! (Defeat Autism Now) Is No More” implies that this movement is over. The ARI newsletter says, “Because the name ‘Defeat Autism Now!’ does not accurately describe the medical approach to understanding and treating autism, and because some people have been offended by the phrase, ARI will no longer use the name.” But ARI continues to focus on “the medical approach to understanding and treating autism”, as well as other approaches.

There is a difference between “some relatively subtle changes to the DAN! approach” (quoting one of Lisa’s comments) and “the Autism Research Institute will no longer promote an autism treatment called DAN! (Defeat Autism Now)” (from the above article). Literally, this statement is true, since it will no longer be called DAN!. But it sounds like they are dropping the treatment approach altogether (plus, it never was “an autism treatment” but a number of diverse treatments).

They are changing the name (for the above above mentioned reasons and the copyright issue) and making some changes (we don’t know for sure exactly what changes, though there are some general statments), but not ending their focus on the biomedical paradigm and treatments for autism.

There was an article in Spectrum Magazine a while back, but I cannot find it on the internet, about how Dr. Kenneth Bock, Doreen Granpeesheh and Dr. Robert Hendren were trying to develop a formal credential program for autism treatments, but when I saw Dr. Bock at a conference and asked him about it, he said it wasn’t going forward at that time. I’m sure it must be very complicated to put together something like this with some kind of quality controls. It must be hard to develop consensus on treatment protocols when there is still so much research to be done, and so much diversity in the patients. I know that practitioners formerly known as “DAN!” had differences as well as commonalities.

September 7, 2011 at 4:45 pm
(30) Ken says:

“I’m sure it must be very complicated to put together something like this with some kind of quality controls.”

First ARI needs an evidence-based approach to treatment before turning its attention to quality control.

September 5, 2011 at 3:39 pm
(31) whiteandnerdy says:

Well Lisa,

A skeptic might point out the timing.

ARI’s change of heart on being “DAN” happened just a bit after some prominent DAN practitioners/testing labs ended up in court for malpractice and fraud. So faced with possible loss of medical licenses, jury awards, or even jail time they changed their tune.

Funny how their editorial comments of these legal problems are so profoundly different from the court record….

The other interesting point is that the substance doesn’t seem to have really changed.

They are still selling the same basic snake-oil, still systematically censoring information contrary to their profits.

W&N

PS did you notice that the European HBOT association condemned the use of HBOT for treating autism?

September 5, 2011 at 3:45 pm
(32) Paige says:

ARI doesn’t promote HBOT. In fact, they included a presentation of a negative HBOT study at their conference in Dallas two years ago (one that says HBOT doesn’t work for autism). What ‘snake oil’ are you referring to? What information are they censoring? What profits? They’re a non-profit, and they’ve been granted the highest rating, four stars, by Charity Navigator. (They’re the only national autism organization that has won four stars.)

September 5, 2011 at 4:25 pm
(33) whiteandnerdy says:

Paige,

Actually ARI does promote HBOT–it is still on their site as of today and more to the point some parents have been recommend to try HBOT.

Why don’t you try reading the Coman court record and compare it to their comments?

Or try looking at porphyrin testing or the mercury challenge test? They clearly don’t work as DAN doctors have been using them–facts which are clearly true but you won’t find this on ARI site.

Finally, while ARI might be not for profit, the point is that so many of its members are making tons of money based on porphryin/mercury challenge/HBOT all of which are/have been advocated by ARI.

You just have to connect the dots.

W&N

September 7, 2011 at 7:01 am
(34) Merritt says:

Remember that they have to pay the expenses for the staff and speakers, print up the manuals and the brochures, and pay for the coffee. Edelson’s compensation doesn’t seem unusual for a PhD. (Charity Navigator wouldn’t have given ARI four stars if their compensation was inappropriate.) Take a look at Autism Speaks’ financials before judging.
The $649 is for the clinician seminar. From their website: “$79/day. Online pre-registration closes at midnight Oct. 11
Pre-register a group of 2 or more and you’ll all save 25% – ends Sep 30th.” So the most a regular person is going to pay per day if they register online is $79. They can pay less if they ask for an angel discount, if they volunteer, or if they bring a friend.
Of course they make a small profit—they have to stay solvent. Someone has to keep the lights on, and Dr. Edelson needs to feed himself, but it doesn’t appear that ARI is profiting unduly. Heck, they put the videos online for free. I watched “Addressing Picky Eating Behavior” last night, and it was incredibly helpful.

September 7, 2011 at 8:16 am
(35) autism says:

Having worked with and for many good-sized non-profits in my life, I will tell you ABSOLUTELY that Dr. Edelson’s fee is moderate. In fact, if Charity Navigator is accurate, ARI is doing a terrific job of handling its finances.

Take a look, if you’re interested, at the relative costs for fundraising, administration and salaries at, say, Autism Speaks. Or at major museums, PBS stations or NPR. You will be shocked. Compared to them, ARI is a jewel.

And I am NOT saying this because I have any personal attachment whatever to ARI. In fact, I’ve stayed well away from DAN! treatments for my own son. I’m saying it because I know the fundraising and non-profit world, and I know how complicated the grants/fundraising/salary issues can become.

Lisa

September 7, 2011 at 12:20 pm
(36) Sandy2000 says:

Some also generating larger funds than others so one cant just look at their fee. You have to also compare other things like administration program expenses. ARI is higher than Autism Speaks. Also look at their primary revenue compaired to compensation. If you add the 2 from AS % of Expenses, and the one of ARI, ARI is higher as well.
Fact still remains there is personal profit and it’s generally a yearly income higher than the average family.

September 7, 2011 at 8:13 pm
(37) whiteandnerdy says:

Lisa,

What is insidious here is the tangled web of financial conflicts.

ARI the organization may be very efficient with the donated money, but the organization is made up of people.

And some of these people are deciding what tests/treatments are advocated by ARI and are also selling these same tests/treatments.

The business model formally known as DAN! is extraordinarily profitable to these individuals.

W&N

September 8, 2011 at 4:25 pm
(38) barbaraj says:
September 12, 2011 at 10:19 am
(39) Karnak says:

The biomedical stuff might work for some kids depending on the cause of ther autism who knows. If they now have identified two strains of autism, they will probably find other types of autism caused by different genes and environmental factors. I have often wondered if autism is more a symptom of the various brain disorders rather than the problem. However what I want as a parent is treatment to follow on from identification of autism causes to ameliorate the severer strains of autism and mental disability in young kids and if possible adults. If they take away real hope then you have little to cling to and the DAN approach gave some of us proactive things to do

September 12, 2011 at 3:33 pm
(40) tina jones says:

If they had a *bad name* in the treatment of autism, I’d bet the physician’s wanted to be removed from the registry to protect themselves.

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