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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
