If you’re the parent of an autistic child or adult, and you are also horrified by MAGA-style disinformation, please know you should be just as skeptical about getting autism information from people I’m going to call “grievance parents.” These are parents who brand themselves as autism experts, yet promote reactionary ideas about autism and resentment towards autistic advocates, while encouraging followers to become too upset about having autistic children to question autism misinformation. Knowing how to identify and avoid grievance parents matters, because their efforts limit autistic people’s already challenging lives, instead of enriching or improving them.
Who are these grievance parents? They are generally—like me—parents of autistic children with significant disabilities. Except instead of targeting “the libs,” grievance parents and the forums they run target autistic, disability, and neurodiversity activists. Meaning, the people who fight for to protect autistic kids’ rights, and improve their and their families’ lives. It is painful to watch parents who should be my and my son’s allies instead publicly declare war against the autistic adults their children will grow up to be (or in some cases already are) and dismiss the valuable advice autistic advocates provide. Or to see how grievance parents deflect queries about such behaviors by enlisting and spotlighting outlier autistic adults who agree with them.
It’s understandable when parents new to autism to look to other parents for help. But it’s also crucial for them to understand that autistic adults are not the enemy. Like the leaders of any other community your child belongs to but you do not, autistic and disability advocates have beneficial insights and learned wisdom that non-autistic parents simply cannot provide (and that, as a bonus, research supports). My mostly non-speaking son has become several magnitudes happier, and my own parenting experience has become significantly less fraught, thanks to autistic guidance.
My son’s disabilities require full-time support, which means he and I live the very lives grievance parents tend to portray as horror shows. Please know that I would never deny how challenging things can be for families like ours. Accessing the supports my autistic son needs can be brutally difficult, especially as he and his peers transition into adulthood. But unlike grievance parents, I believe my son deserves respect and understanding—not grievance parents’ relentless exploitation of their children as burdens.
You can identify grievance parents by how they reject insights and advocacy from autistic and disability communities—insisting autistic adults “despise parents of autistic children,” while invoking Trumpian egocentrism, and maintaining that it’s parents like them who “have been at the forefront of reforms aimed at improving the lives of those disabled by autism.” They also often claim that they need to “be their children’s voices.” These stances are troublingly out of sync with rights- and services-focused developmental disability organizations, as well as a worrying denial of their children’s communication capabilities. As autistic advocate Julia Bascom reminds us, “There are no voiceless people. There are plenty of people who are spoken over, ignored, or not given an accessible way to communicate.”
Note that grievance parents differ from anti-vaxxer autism parents, who have become—finally, thankfully—a recognized fringe group. At the moment, grievance parents head autism organizations perceived by autism advocacy outsiders as useful, including the National Council on Severe Autism (NCSA), and the Autism Science Foundation (ASF). But instead of partnering with autistic advocacy leaders and developmental disability organizations to improve autistic lives, grievance parents lobbying efforts tend to be obstructive—including debunked conspiracy theories about autism epidemics, misinformation about autistic advocates defunding medical research, and hyperbolic negativity about autism issues.
Grievance parent leaders, Like MAGA figureheads, are masters of aggressive hypocrisy and spin. They are generally wealthy, connected parents who sit on multiple boards and head foundations, yet claim to be bullied by neurodiversity and autism advocates (i.e., by systematically marginalized and largely impoverished disabled people). Grievance parents are in positions of privilege and influence—are some of the most thumb-on-the-scale influencers in autism policy and research—yet take advantage of entrenched negative social attitudes about disability and their status as parents of high-support autistic children to appear like typical Davids, and avoid being outed as elite Goliaths.
Consider how grievance parents recently hijacked a Lancet commission on strategies for improving autistic lives to promote a “profound autism” label, after their efforts to formalize a “severe autism” label failed. “Profound autism” became the focus of most post-commission media coverage, even though neurodiversity advocates spoke out about the functional inappropriateness of the term: “Profound autism” oversimplifies support needs, dismisses abilities, and reinforces segregation, in addition to being superfluous (per autistic journalist Sara Luterman: “The DSM already has level 1, 2 and 3 to describe differing support needs in autism. But perhaps ‘level 3’ doesn’t sound stigmatizing and negative enough for proponents of ‘profound autism’ as a label”). In response, grievance parents relaunched their campaign—this time with opinion pieces bemoaning censorship.
Another MAGA-like grievance parent strategy is to solicit pity (for themselves, not their children) by constantly violating their disabled children’s privacy in the name of “honesty.” (I will not compound their missteps by linking to an example.) Yet when disability researchers and policy makers suggest perhaps talking about autistic people with respect, and about disabilities with neutrality, grievance parents respond by campaigning at the highest policy levels for their right to use demeaning language about their own disabled children. When autistic people describe autism as meaning strengths as well as disabilities, grievance parents claim that they are being ridiculed for not talking about autism as a gift.
Grievance parents also ape MAGA’s strategy of claiming to represent a wider underserved (autism) community, while in actuality working against the interests of autistic people and families who lack grievance parents’ class advantages, or who have trouble accessing public benefits. This disconnected entitlement is—I suppose—why, while autistic people themselves beg for increased quality of life and participatory autism research and policy, grievance parents endorse cure-based or self-funded autism causation research, advocate for institutionalizations and against best-practices community housing policy, and even—in a climate of Extreme Right-manufactured paranoia over voting fraud—blithely argue for the right to co-opt their adult autistic children’s votes.
Why are grievance parent behaviors tolerated by parents of autistic kids savvy enough to roll their eyes at Fox News propaganda? I suspect a contemporary political and social climate rife with strategic disinformation campaigns. Social media algorithms that harness negativity to increase views allow grievance parents to create echo chambers of indignation, with followers who don’t bother to fact check before sharing. In grievance parent forums, the result is absurdities like painting the autistic-led organization The Autistic Self Advocacy Network (ASAN) as a social media troll factory—when the briefest scan of ASAN’s website shows constant high level, actively accessible policy and outreach in support of marginalized autistic people, including those with communication barriers. Like MAGA disinformationalists, grievance parents manipulate their followers’ emotions, keeping them too angry to think critically.
Weaponizing that rage takes many forms, most of them divisive. Families of autistic children are near-universally advised to put their kids in Applied Behavior Analysis (ABA), but if they encounter autistic advocates who say that ABA will traumatize their child, grievance parents take advantage of that uncertainty to create a wedge in their agenda’s favor. If you are new to autism, who are you going to believe: The veteran autism parents offering to mentor you through an overwhelming and confusing time, the ABA therapists who are often the only supports you can access—or the autistic people who grievance parents insist are nothing like your non-speaking, high support autistic child? It is unsurprising when some parents fall for grievance parents’ poisonous myth that autistic children’s own community members are the enemy.
I acknowledge that grievance parents do some useful things like hosting autism-friendly pool parties or sensory-friendly concerts. Which our communities need more of! But which do not in any way excuse their counterproductive actions, like attempting to undermine autistic and disability-led policy progress against sub-minimum wage (especially given that, unlike many autistic and disabled adults, their children and families are unlikely to ever depend entirely on disability benefits). And even those social events worry me, because parents in these environments may become contaminated by grievance parent misinformation.
By being so relentlessly focused on “severe” or “profound autism,” and autism “robbing” them and their children of ‘normal’ lives,” grievance parents also condition their followers to deny possible autism traits or abilities in their own family. How many “severely autistic” children are never offered functional communication strategies because the people in their lives don’t see the point, as happened to non-speaking autistics Hari Srinivasan and Jordyn Zimmerman? What if some of grievance parents’ other kids are autistic, but are misdiagnosed or able to mask well; or have been so conditioned to hate self-diagnosing autism “fakers,” that they don’t pursue a diagnosis, or don’t believe they deserve accommodations? What if the grievance parents themselves, or their partners, have unaddressed traits? All people with disabilities deserve support, even the misguided ones.
So when grievance parents complain that autistic people and their families don’t have enough supports? They’re right. But their solutions are wrong, because as outsiders to the autistic community they are trying to fix problems they don’t understand. In this, their attitudes are as misguided and harmful as transracial adoptive parents who keep children from their birth communities. Per autism researcher Sue Fletcher-Watson, herself the parent of an autistic child:
“I simply cannot comprehend why the crucial and unique revelations of autistic people are being rejected in this way. Raising an autistic child who “is minimally verbal and suffers from painful self-injurious behaviors, intellectual disability, aggression, anxiety, sleeplessness and seizures” must be incredibly hard — why turn away such an amazing source of insight?”
I have hope, now that people are tiring of MAGA disinformation, that more will see past grievance parent disinformation as well. If you want your autistic child and your family to have the best possible lives, try to avoid grievance parents. Instead, seek autistic advice, including from parents who are autistic themselves like Supernova Momma or Iris Warchall; or non-autistic parents who treat their autistic kids with love and respect, like Jess at Diary of a Mom, or David Perry. You want to connect with people who are on fire about realistically improving autistic lives, not mired in bitter self-pity about having disabled children.