Monday, June 7, 2010

Identifying and Avoiding Autism Cults


A child's autism diagnosis can 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 a child with autism, 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."
Autism cult members ignore the one current 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 exceptions. They make scientists and critical thinkers rage with indignation. They aggressively denounce skeptics, and foster a culture of righteous true believers. They rarely talk about support and love for autistic children in the present, and focus instead on theoretical future non-autistic kids.

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, occupational, and other 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, had helped us avoiding falling in with a moderate autism cult, Defeat Autism Now! or DAN!.

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, 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 husband 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 walked away from chelation.

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.

Families of children with new autism diagnoses can avoid cultish mistakes like ours if enough veteran parents reach out to them, and encourage them to choose logic over hype. We can help parents of newly diagnosed children with autism 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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A version of this essay was originally published at BlogHer.com