To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests. In autism politics, the factional disagreements are diverse and deep. Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them. For people with autism, the issue involves their very identity.
Laura T. Coffey at Today:
“There’s this tragedy narrative out there implying that autism is a fate worse than death — when it simply is not,” said Amanda Seigler, 39, an autistic mom of autistic children who serves as an administrator of a Facebook group called Autism Inclusivity, which has more than 70,000 members.
“There are too many ‘martyr parent’ groups out there — groups where parents use their children for sympathy,” Seigler continued. “They say, ‘Oh, poor me, my child had a meltdown today.’
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“I feel very strongly that the complaints by mildly affected autistic adults that parents are violating their kids’ privacy by writing about them represent the most insidious form of censorship,” said Amy Lutz, a Pennsylvania author, mom of a 22-year-old severely autistic son and vice president of the National Council on Severe Autism. “Severely autistic individuals don’t have the capacity to consent, therefore parents are forbidden to speak about them, therefore the only voice the public is supposed to hear is that of autistic adults who claim to speak for the entire spectrum.”
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John Elder Robison is an autism expert who feels empathy for all the autism factions who spar on the internet. A best-selling author of memoirs about his own autism diagnosis at age 40 and a leader of neurodiversity initiatives for universities and U.S. government committees, Robison is also the son of an autistic father and the father of a 31-year-old autistic son.
In a recent Psychology Today essay with the headline “Your Autistic Child Is Perfect and May Need Help,” Robison addressed the autism wars being waged online.
“In the autism community, we often say, ‘Nothing about us without us,’ meaning any conversation about autistic people should be led by autistic people,” Robison wrote. “It makes sense, but it’s not the whole story in this case. There is another equally valid perspective. ‘Nothing about us without us’ applies equally well to parenting. ... If the topic is parenting an autistic child, what better voices than autistic parents?”
