BlogHer - Identifying and Avoiding Autism Cults - Comments

Skeptics Both?

Shannon Des Roches Rosa — Sat, 05 Sep 2009 13:53:34 -0500

I agree in that it appears we both are advocating skepticism. Again, as long as people are thinking long and hard and doing research before they make choices, and not feeling intimidated or "saved," I'll respect that choice even if it's not one I'd make myself. And I will continue to caution parents against any medical or therapeutic decisions based on "mommy instinct," fear, anecdotes, or misrepresentation of statistics.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

You Make a Lot of Sense

Stephanie2 — Sun, 23 Aug 2009 13:24:30 -0500

You make a lot of sense in your response to my stories. I understand that people are looking for scientific "evidence". "Evidence-based medicine" is what I used to toute as a marketing tool to the mainstream doctors which I called on as a pharmaceutical sales rep. However, when you are involved behind the scenes as I was, you tend to see the reality behind the "evidence". The results that the clinical trials are reporting are sometimes distorted in favor of the pharmaceutical agent that it is testing (after all, if the drug appears to do nothing or even be worse than placebo, it will not sell). I could go on and on about this topic...

I could also go on and on about how the pharmaceutical companies control health care behind the scenes and the mainstream docs become their pawns in their freshman year of medical school (b/c many of the medical schools have financial ties to the pharm companies), and therefore, we as consumers or patients become pawns in the end. Medicine is increasingly becoming more about the bottom line rather than increasing the quality of patients' lives. I hate to admit that I was part of all of this as a rep and I did gain financially. My doctors and I went on international trips as a result of high numbers of prescriptions being written. Many people just don't realize what goes on behind the scenes on MANY levels of healthcare.

So, why is there not huge amounts of research going into the fundamentals of the DAN protocol? Maybe because no drug company is going to put their money behind it. Maybe it will come in time, but I was not going to wait around until my children were 20.

Even outside of the DAN protocol, anything that I have found to help my child has not come to me by way of a mainstream doc. I find that talking to other moms (anecdotes) has been a tremendous help. That's how we found an excellent OT for my son's Sensory Processing Disorder. It is other moms who pointed out that my son's tics and severe, intermittent personality changes may be due to PANDAS (the DAN didn't even come up with that one). Sure enough he tested positive to strep, we gave him a strong antibiotic and the tics disappeared in a week and he stopped having meltdowns.

I understand the need for "evidence" in medicine, but sometimes the anecdotes (expecially for a topic like autism, which seems to be lost in the mix) can be tremendously helpful.

You Make a Lot of Sense

Stephanie2 — Sun, 23 Aug 2009 13:24:25 -0500

I understand the need for "evidence" in medicine, but sometimes the anecdotes (expecially for a topic like autism, which seems to be lost in the mix) can be tremendously helpful.

Glad Your Children Are Well, But That's Anecdote, Not Evidence

Shannon Des Roches Rosa — Sat, 22 Aug 2009 20:03:01 -0500

DAN! is not appropriate for all, or in fact most, kids with autism; also our doctor continued to push the protocol even after all the testing showed that my son was not likely to be a responder.

Children with autism still make developmental progress no matter what, but it is generally atypical, and that may be what has happened with your kids and your neighbor's child. There is certainly no one type of autism or autistic developmental path.

And no matter how many anecdotes I read, I have still never seen reliable research studies on any child with autism showing progress that can be tied to their diet or DAN! protocol or Hyperbaric oxygen treatments, mostly the opposite (e.g., With Autism, Diet Restrictions May Do More Harm Than Good, also Mayo Clinic: There's no evidence that special diets are an effective autism treatment). Although, again, I do see how a child's autism or autism-like behavioral symptoms could be lessened if an extremely uncomfortable gastrointestinal, allergic, seizure, or immune condition was alleviated.

I'm glad your children (and friend's child) are all doing well. Also your doctor sounds like a more reasonable sort.

If parents do the research, and really, truly, believe that DAN! is for them, great. But they shouldn't base that decision on fear and helplessness, and because no one else is giving them answers they like.

I still advise autism parents to approach DAN! doctors skeptically.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

3 More Stories From The Other Side

Stephanie2 — Fri, 21 Aug 2009 23:23:22 -0500

As I read your blog entry I felt truly baffled because your outcome with the DAN! protocol is so radically different from the three boys I have seen transformed from it! I guess if I had gone through this protocol with no results I would feel the same way.

My first experience is with my 4, almost 5 year old. His dx's: Sensory Processing Disorder, Adaptive Disorder with mixed anxiety and depression, OCD, ODD, tics. I'm shocked that he did not receive a dx for adhd... He tested very close to the autistic spectrum, but is not autistic (although he has many symptoms). Within about 2 months into the DAN protocol we witnessed the following changes: no more constipation, uricaria, allergies, asthma, severe croup, tics, stuttering; 90% reduction of "stimming";amazing ability to socialize and strike up conversations (he used to growl at strangers and run away); amazing increase in receptive and expressive language (used to say "what did you say" every time I spoke to him, now he looks me in the eye when I speak and fully comprehends what I say and correctly responds); more awareness of his environment (asks tons of why questions), I could go on and on....

Some of the findings in the bloodwork for my son: PANDAS (autoimmuntiy with strep infection which causes tics and OCD, requiring an antibiotic), Vit. D deficiency, Zinc deficiency, copper toxicity,need for riboflavin, food allergies (wheat, soy, eggs, garlic), intolerance to foods with phenols. We did not have to chelate, as my son's metals tested low.

My second experience is with my 18 month old. He had many health problems and what appeared to be "regressions" or a severe "lack of progress"...good old developmental delay in all areas. There were times when he was completely mute for 6- 8 weeks. By the time he was 13 months old I knew that he was heading toward autism. He had not met any new milestones in 6 months, was quite delayed, and most upsetting, he would sit in the corner for HOURS if I let him. He would just sit there playing with toys in complete silence. If I sat to play with him, he would just go on playing like I wasn't there. I got him into the DAN protocol and within 2 WEEKS of the gfcf diet he began to crawl through the house looking for someone to "play" with! I couldnt' believe the first time I was loading the dishwasher and he came to me, pulled out a spoon and handed it to me! The doctor then added a couple of supplements which just made him come alive and want to verbalize. Example: he used to sit in the high chair like a bump on a log while I would feed him. Well, he finally started pointing to things that he wanted and tried to communicate to me. He started playing little teasing games, like throwing things on the floor just to enjoy my reaction, or he would hand me something and then take it away and giggle at me. Some say that this is just a coincidence, but I say NO WAY. He had zero development in 6 months and now he has blossomed within 2 -4 weeks! He continues to develop. We are only half-way through the protocol with him.

Before I tell you about the third experience, I want to comment on what my boys' pediatrician has to say about all this. She has not seen much of my 4 year old (because he never gets sick anymore thanks to the DAN protocol), but she does see my 18 month old for his check-ups. When I saw her at the 12 month check up she sent my son to a neurologist because he has some type of "syndrome". She wouldn't tell me what "syndrome" she was thinking of, but I knew that she thought there was something very wrong with my son's development. When she saw him again at 16 months she couldn't believe that he had made so much progress. She knew we were seeing the DAN. She knew that my son was gluten and casein free. She said that he must have celiac disease since he responded so well to the diet. I say, maybe she's right, but I think there is more to it. I think he had or was close to autism and the DAN protocol was just what he needed to get him back on track...I'd also like to add that since birth he has had chronic colds, infections, and constipation (he also started becoming "croupy" right before starting the protocol). Not anymore. If he does get a little cold, it is over in a day or so with no secondary infections.

My third experience: my friend's 4 year old son diagnosed with PDD-NOS. As she saw my boys improve she decided to persue the DAN protocol with a different DAN than the one we were using. When she gave him the first supplement, it was clear to both of us that he would be a responder. He is now on about 6 supplements (all of which were prescribed based on bloodwork) and is a different child. This is a child I have known since birth. This is a child who has always been developmentally delayed and was in his own little world. This little boy never spoke to me, even when I would try to speak to him. When my 4 yo would try to engage him to play he would just sit there and ignore him and bang on a toy or something. NOW, 6 weeks into the DAN protocol, he strikes up conversations with me, LOOKING ME IN THE EYE! He calls me "Miss Stephanie"! He engages in play with my son, he even initiates play! I have to be honest, I am almost jealous of the response that they have seen. I had to do the gfcf diet (among other diet alterations) to get that kind of response. All she had to do is add some supplements! They still have a lot more to do, but I have a feeling that he will be simply amazing when she is done!

If you are still reading this, I'm not going to say that this has been an easy path. I have been putting 2 boys through the protocol at the same time. My husband and I have had to give up all extra spending. We have even tapped into savings. When the doctor suggested Hyperbaric Oxygen Chamber for my 4 yo, we actually had to stop because we can't afford anything else beyond the expensive food and supplements. Yes, in going down this path you are taking a risk of losing a lot of money if you don't get any results. But if my kids had cancer, I would still treat them even if there was only a 30% chance that they would live. My doctor was very upfront about his abilities. He says that he doesn't know which child will respond and which won't. Maybe I am just one of the fortunate ones. But I will say this, the DAN protocol has changed our lives. I used to spend hours every week in the doctors office (pediatrician, allergist, etc) with my boys and the doctors just put bandaids on their booboos. My 4yo's asthma/allergies started to become life-threatening. On two occasions I had to throw the kids in the car and head to the ER. Every time he would get sick (at least once a month), he would need the following: antibiotic, steroid, nebulizer. Not anymore. When he gets a cold now (which is very rare), it is over in 24-48 hours. No doctor appt, no medication. We have not used the nebulizer in 7 months (we used to use it about 4 days/month). Chronic urticaria (hives)? The mainstream MD's prescribed antihistimines which made my son CRAZY. After starting the DAN protocol, no more hives. Constipation? Both of my children were on Miralax (4 yo was on it for 18 months, couldn't poop without it). We were able to get both kids off of Miralax within a couple weeks. In a nutshell, our lives have changed and my husband would say the same thing. We think it is a miracle and an answer to prayer.

I am not posting this to make anyone feel bad who did not have a good experience with the DAN protocol. I just want both sides to be represented. You need to do your own research and don't be swayed by what your "friends" are doing. You need to research any doctor that you go see, mainstream or alternative. There are alot of incompetent doctors out there who will do more harm than good. Our DAN (Andrew Levinson, Miami), and my friend's DAN doctors (Bradstreet and Rossignol, Melbourne, FL) are very well respected and well-known in the autism community, and they are known for having a high success rate. Anyone can become a DAN, you need to do your research before signing on.

Skeptics Do Their Own Research

Shannon Des Roches Rosa — Mon, 27 Jul 2009 22:04:48 -0500

Anyone who takes my advice without thorough and supplemental research is no better than I was for believing so desperately in our DAN! doctor. If you have found a trustworthy DAN! doctor who is making a real difference for your child based on evidence-based practices and not through convincing you to suspend your disbelief while opening your wallet, then that is great. But there are far too many misguided and opportunistic autism professionals out there for me to not take a very vocal stand on behalf of those children who will not be helped, and those families whose hope and funding will be stolen away.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

the other side of the coin

mauicav — Mon, 27 Jul 2009 19:29:59 -0500

I hope another side of this story can be presented. I've had a different experience that is equally as valid. I'm sad to see you throw blanket over an entire group of people and claim they have all been misled or are just too "susceptible" to "inappropriate" therapies.

I really agree with your point that all treatment options be evaluated and scrutinized - that's the same approach we have taken with our daughter as well. I can speak for our medical provider who would say that nothing is guaranteed, that there is no known casue or cure, but that some improvements might be possible with certain treatments - if only you try them.

Do note that I agree with the medical community at large - and you - as it relates to chelation. It's quackery for sure. I do, however, believe that SOME of these kids can have metals problems and that taking steps to avoid further ingestion of metals is reasonable.

While I do not deny that there are some "over-the-top" folks out there who verge on cultism - I feel like you're just sterotyping here and that's unfortunate because you seem like a truly well intentioned and erudite person.

I fear that a family might read this and not pursue an appointment with a DAN doctor and find them to be equal parts skeptic, realist and yet willing to try treatments that aren't "mainstream." Maybe our doctor IS different, so even more reason to encourage parents to give it a try.

Since autism is a disorder that science knows so little about, we are all reaching out for answers. It's an affliction that involves not only the neourological system, but maybe even the immune system and so it combines the two systems that science struggles with the most - should it really shock anyone that answers aren't "at the ready?"

Meanwhile, real kids and their parents struggle because there is no single playbook. While we should always be inquisitive, scholarly and critical of any treatment we put ourselves through or our children through, I find it interesting that somehow you have all the answers.

I'm truly sorry your journey started out so rough - it's mostly terrible that someone would have indicated a cure was the goal or even an expectation - that's the real tragedy.

So we are all on our own journey until real research that is unbiased and well funded can give us more insight. Unfortunately, the realist and the skeptic in me tell me that we're a long way from that. Too many drugs are put on the market and then pulled off the market - and too many medical studies are conducted with desired results in mind. So, we will all do the best with what we have - finding time to allow our children be children and doing our best to improve their life every day.

J. Handley http://vineschool.org

Autism Corp is Awesome

JulieJordanScott — Sat, 25 Jul 2009 14:15:34 -0500

I don't attend as many parent support groups, mostly because I was turned off by the cults without even knowing the cults (or non) cults existed.

I am in the "Non Cure" - Embrace what it is school of thought....

The Autism Corp idea is fantastic. I worked on a short film with Inclusion Films, a film company that teaches film making skills to folks with special needs and then helps them find work in making all sorts of film. Joey Travolta owns the production company and is a huge advocate for autism. He is speaking for the program my son attends in September. I thought of him immediately... anyway...

Great stuff!

= + =
Julie Jordan Scott is a Writer, Life Coach, Poet,
Speaker, Actor, Director and Mom Extraordinaire
http://juliejordanscott.typepad.com/

I think we in fact mostly agree...

Rufuscut — Sat, 18 Jul 2009 19:36:07 -0500

any truly child-engaged, consistent approach with input from a knowledgeable third party (QA-style) would help

I think that's the key, yes.Thanks for the kudos for No.2 son, btw. Yep, he's come a long way. Glad to hear your lad is making good strides too.

The trouble comes, I'd say, when people are promised cures or recovery (whatever the explanation for the origins of autism or the method of redressing it offered); that something will 'take the autism away' . Vulnerable, frightened parents are easy pickings. To look at an autistic three year old and think "will it always be like this?" can be very scary. When I served on a parents' helpline, one of the most helpful things I had to say (and the older my son became the more authority I had to say it) was that 'things will most likely change from where you are now, the point of diagnosis: our children grow and develop, albeit in their own unique way.'

Heh. Reminds me of the time a few years ago that No 1 son, trying to be tactful, made some remark about No 2 son's being 'unique' after he'd dropped some awful social clanger. No 2 son piped up with the line he'd lately had from school that "everyone's unique", to which the response was "Yes, but you're unique in a quite different way to anyone else"...

I'm In.

Shannon Des Roches Rosa — Mon, 13 Jul 2009 14:17:18 -0500

Missy,

Thanks for sharing your story and those great links. I hope other like-minded readers will find them useful, too.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

@Rufuscut Hooray for your

Shannon Des Roches Rosa — Sun, 12 Jul 2009 00:56:57 -0500

@Rufuscut Hooray for your intrinsically wonderful son!

ABA has changed a LOT since Lovaas and the 40-hour mantra/aversives/one-size-fits-all approach. My son's program has always been incredibly flexible and specific to his needs, with reasonable goals. It incorporates natural learning, Pivotal Response training, inclusive playgroups with typical peers, self-help skills, gradual generalization of skills (learning to do them independently in different and spontaneous environments, not just at the table with a therapist 10 times in a row), etc.

And it's not just us. This kind of varied, customized program is what is recommended by most ABA providers, based on reports from recent ABA conferences.

However ABA is still data-driven. And for that I am grateful. I am able to track my son's progress not just month-by-month, but see yearly cycles of improvement (spring) and regression (winter).

My son thrives on the structure and routine of ABA. But I think any truly child-engaged, consistent approach with input from a knowledgeable third party (QA-style) would help.

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

A small point: ABA can, in

Rufuscut — Sat, 11 Jul 2009 17:33:50 -0500

A small point: ABA can, in my experience, be just as much of an autism cult as biomedical approaches. The whole "40 hours a week of intensive therapy started early enough and sustained long enough and your child *will* recover from autism" line was all too common around the time I became part of the autism families' community in the UK (around 1995). Based on a study of only 19 individuals, a 'cure' rate of 2/3 was consistently touted as a basis for local authorities funding expensive programmes but never replicated in any scientific way. A huge Europe-wide study that I was promised would prove it beyond question to be the only effective approach went quiet after a few years and I never did hear the outcome despite repeated enquiries.

Bits of the ABA approach may be useful to teach certain skills, but then so are many other educational approaches. Fundamentally in my view if it's in the child, careful and appropriate (ie addressing he individual's strengths and weaknesses) education both formal and informal will bring it out - if it isn't, and the child's difficulties are just too severe, then it's far harder and no approach is guaranteed. The experience of many families I know bear this out.

We were lucky - our now 18 year old will, with support, be able to live semi-independently. But a lot of that is intrinsic to him more than anything.

Another term used

autismfamily — Sat, 11 Jul 2009 15:14:13 -0500

I saw a you tube clip of Karyn Seroussi on The today show yrs ago and she says her son was "kidnapped" at around 1:20 of the clip

http://www.youtube.com/watch?v=2EJUsyypI4Y

using that term sure is taking it to the extreme level. She sent me an email few months ago in response to my HARO and I researched her and after seeing that clip there is no way I was going to review her latest book.

Amazing!

Missy Raven — Fri, 10 Jul 2009 19:56:39 -0500

Shannon, I am a new autism mum (and is has been suggested a possible Aspie myself) My 5 year old son was diagnosed just 4 weeks ago...i was lucky enough to be taken under the wing of an amazing group of ladies who have set up a group on FB called Countering AoA http://www.facebook.com/group.php?gid=91368243169 (incase you fancied a look) as soon as i read what they believed i knew that was how i felt.

My son is not "Vaccine Damaged" or "Broken" as some of the "Cults" suggest, he is plain and simply Alfie...my boy!

We have since set up our own forums and website to try and help/support others who are on the same amazing journey as we are.

feel free to come and have a look around...

http://www.raisingautism.co.nr/

When i read your Blog i round myself nodding along with your words, they are inspirational and, well for lack of a better phrase Spot on!

thank you for sharing your story

@bratling, sounds like you

Shannon Des Roches Rosa — Fri, 10 Jul 2009 18:03:57 -0500

@bratling, sounds like you and your family (and likely your sister) have all had rough patches. But please don't give up hope; early intervention is important, but that doesn't mean that behavioral approaches stop working after a certain age -- they continue to work with people of all ages. I would recommend getting a consult from a behavioralist familiar with previously undiagnosed adults, if that is possible for your family.

In the meantime, it might help you to try and understand her behavior. I recommend readingFunctional Behavior Assessment for People With Autism: Making Sense of Seemingly Senseless Behavior by Beth A. Glasberg. I also recommend books by adults with Autism or Asperger's, such as Look Me in the Eye by John Elder Robison, Born on a Blue Day by Daniel Hammett, and Thinking in Pictures by Temple Grandin.

Does your sister have connections with peers? If not she might find it helpful. The Asperger's Woman Association is on Twitter at http://twitter.com/AspergerWomen and has a site at: http://www.blogtalkradio.com/AspergerWomen.

Good luck, and again please don't think it's too late to bring some harmony to all members of your family.

Regards,

Shannon Des Roches Rosa
Squidalicious.com parenting first, autism second
CanISitWithYou.org
real tales of schoolyard terror and triumph

Identifying and Avoiding Autism Cults

Shannon Des Roches Rosa — Wed, 01 Jul 2009 01:27:44 -0500

A child's autism diagnosis can really mess with parents' heads. Media portrayals of children with autism and their adult spectrum-mates dwell almost exclusively on negatives and challenges, so when a parent is told that their child is autistic, they are usually incredibly upset.

It doesn't help when doctors lack the bedside manner to soften the emotional impact of their diagnoses, or have no information about contemporary autism therapies and resources. When that happens, parents are both freaked out and flapping in the wind. Their child's doctor was supposed to give them answers and guidance, but instead upended their lives, then shoved them out the door. No one can explain why they have an autistic child, and they know nothing about autism. They are emotionally reeling, angry with the medical establishment, and hungry for any information that will help their child.

Most parents start researching autism treatments, and quickly become overwhelmed by competing approaches, therapies, and programs. There is no primary autism authority to direct them, so the parents' decision-making process becomes fueled by desperation. Their critical thinking skills degrade as they are asked to decide between evidence-based approaches that take time and effort, and unsupported testimonials promising recovery, and even cures. And they're still looking for someone to blame, even as they search for answers.

They are perfect targets for autism cults.

If you're not familiar with cults, please watch Diane Benscoter's presentation on how they rewire the brain via viral mimetic infections while bypassing critical thinking. According to Ms. Benscoter, cults provide:

"Easy ideas to complex questions [which] are very appealing when you are emotionally vulnerable. Circular logic takes over, and becomes impenetrable ... The most dangerous part is that [the cult mindset] creates Us & Them, Right & Wrong, Good & Evil. And it makes anything possible, anything rationalizable."

The most prominent purveyors of autism cult-think are Generation Rescue and "The Daily Web Newspaper of the Autism Epidemic," Age of Autism. Both ignore the one truth about autism -- that no one yet knows its cause -- and position themselves as autism's truth-speakers, as fonts of non-compromised autism knowledge. They inappropriately promote biomedical approaches for all autistic children, undermine public confidence in vaccines, and perpetuate big pharma conspiracy theories. They support their claims not through evidence, but with testimonials and exceptions. They make scientists and critical thinkers rage with indignation. They aggressively denounce skeptics, and foster a culture of righteous true believers (just click on a few AoA posts and check out the comments). They rarely talk about support and love for autistic children in the present, and focus instead on theoretical future non-autistic kids.

Don't listen to them. Don't let your friends listen to them. They're toxic. They willfully spread misinformation. They neither recognize the spectrum of autism symptoms and the variety of ways in which our children respond to therapies, nor do they respect autistic individuals' and families' declarations of acceptance or pride.

I understand how tempting it is to trust people who offer an outlet for all that pent-up post-diagnosis fury, and who dangle visions of cured children in front of your eyes when others offer improvements only through painstaking behavioral, speech, and occupational therapies. It might be a temporary relief to stop thinking and succumb to those promises of turning the autistic child you have into the neurotypical one you thought you would get -- but it would also be a betrayal, because few children are as vulnerable or in need of clear-headed advocacy as those with autism.

The best investment you can make in your autistic child's future is a commitment to intense scrutinization of treatment options. Does an approach make sense, or do you just really, really want to believe it will help? Are there real risks and only possible benefits? Do data and studies support it? If so, are they from independent sources or biased ones? New autism parents need to work past their fear and confusion, and embrace their critical reasoning skills. (If you need a skeptical thinking refresher, Michael Shermer's "Baloney Detection Kit" lists ten criteria for evaluating questionable claims.)

Parents also need to systematically track their child's therapies, behaviors, and health so they have the data to back up any decisions. Gut feelings are not reliable indicators of progress, despite autism cult members' declarations.

I wish someone had given me this frank advice after our son's diagnosis, and prevented my husband and me from becoming one of those frustrated, susceptible post-autism-diagnosis couples. Generation Rescue wasn't around in 2003, so we fell in with a more moderate autism cult, Defeat Autism Now! or DAN!. DAN! promotes the same approaches as Generation Rescue, but through a network of earnest MDs rather than Generation Rescue's and AoA's "warrior" parents.

I consider DAN! an autism cult because they recommend putting autistic children through their customized, costly, and rarely-insured diet, supplements, and alternative medicine wringer whether the child is a legitimate candidate or not (review tales of children helped by DAN!-type methods, and you'll almost always encounter kids who are physically ill in addition to their autism diagnoses; as their physical symptoms improve, their autism symptoms diminish). Think of it this way: would you send your child to a doctor known to prescribe chemotherapy every single time he or she even suspected cancer? My husband and I wanted to believe that DAN! methods would cure our son, but they didn't. It was irresponsible for our doctor to say they would -- there are no guarantees of anything when it comes to autism -- and unethical for him to continue recommending them when it became obvious that our son wasn't a responder.

We embarked on our son's DAN! journey around the same time we started our son's home behavioral therapy (ABA) program. We saw improvements from ABA right away, and thought we saw them from DAN! too, probably because ABA's slow and steady gains were not as alluring as the magical thinking of DAN! We became fully invested in the DAN! protocol and were such true believers that I would choose DAN! appointments over those for speech or occupational therapies. I even walked into my pediatrician's office and self-righteously lectured him about DAN! theories.

Our one roadblock to going full-DAN! was chelation, or using the drug DMSA to leach excess mercury from our son's body. (This was in 2004, before the autism/mercury poisoning/vaccine theory was thoroughly discredited.) We trusted our doctor when he said that mercury was exacerbating our son's autism, and intended to chelate once we'd researched the matter thoroughly. But our research (and that of our relatives) revealed nasty side effects, and we started to waffle and doubt. Then my father-in-law, a medical professional with a reverence for scientific methodologies, spoke up about his chelation concerns, and we became even more fretful. The chelator behind the curtain was finally revealed after our DAN! doctor tested our son's mercury levels, said they were low, and told us it was because mercury was being stored in his fats and needed to be chelated out. My partner asked what would be recommended if our son's mercury levels had tested high, and got the reply, "Chelation." The test results didn't matter; he was always going to recommend chelation. We could no longer suspend our disbelief, and postponed chelation indefinitely.

We tried to remain true to the rest of the DAN! protocol, but became increasingly discomfited by ceaseless recommendations for new supplements, expense, and lack of even a placebo effect. When our son's cobra-like reflexes resulted in cookie-based "challenges" to his special wheat-free, dairy-free (GFCF) DAN! diet, ABA data showed that the transgressions didn't affect his health or behavior, not at all. I started to wonder if my son might not get the miracle cure we'd been promised. Then we had another crack in the DAN! armor: our ABA program supervisor spent four months tracking DAN! supplements versus behaviors, and determined that illness was the only variable that affected our son noticeably. Not diet. Not supplements.

We started to realize that DAN! diet and supplements affected nothing except our bank account. We stopped seeing our DAN! doctor, gradually took our son off the GFCF diet, and eventually abandoned all but the nutritionally significant supplements.

I guess that makes us the recovered ones, not our son.

New autism families can avoid cultish mistakes like mine if enough veteran parents reach out to them, and encourage them to choose logic over hype. We can help parents of newly diagnosed autistic children make careful choices and maximize limited resources. We can prevent them from taking their kids on expensive and emotionally-propelled journeys to nowhere.

To do this, we need to be outspoken in identifying crusaders for fringe autism interests, and those who ignore autistic voices yet claim to speak for all autistic families. We need to be vigilant in calling out misinformation, ignorance, and potentially harmful advice. And we need to keep our virtual doors open and welcome mats out, because most of the families who fall into autism cults will eventually lose their faith, and start looking for answers anew. They'll need to know where to find them.

Two days ago my son had one of the best language days in his life: full sentences, descriptions, new constructions and lots of them. It was near-miraculous, but even so I applied rational thinking and reminded myself that, despite his delays, my son will naturally continue to develop and expand his skills. But if I was still following the DAN! protocol, I would likely be freaking out, trying to figure out which supplement and dietary modification had brought about his remarkable change. Be careful about falling for an autism cult; you might never trust your own judgment again.

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Recovered and recovering autism cult parents:

Cammie McGovern: Autism's parent trap: When false hope can be fatal
AutismWatch: My Involvement With Autism Quackery
Kristina Chew: And When We Were Wrong, We Promptly Admitted It
Can Mom Be Calm: Biomed: What It Did and Didn't Do For Us