By Aly Bernhisel / For The Herald
Autism has been in the news lately, largely due to recent comments and decisions from Robert F. Kennedy Jr., Health and Human Services secretary. As a mom of an autistic kid, I feel compelled to respond to a recent interview of his by first sharing some thoughts on why autism is a topic that must be approached with extraordinary care:
• Autism is a complex, emotional topic. It’s one that deserves to be approached with care and listening and understanding because it impacts infinitely worthy and valuable humans who are navigating a world that, in various ways and to various degrees, doesn’t adequately understand and value them.
• Autism also deserves this care because of how big and diverse its tent is.
It’s true that no kid or adult with autism is the same, and that the impacts of autism can be beautiful and joyful and also scary and hard. Acknowledging autism’s impacts includes hearing perspectives like this one from a mom of an autistic boy with significant support needs who recently wrote that she would “take away” her son’s autism “in a heartbeat. … And until you’ve watched your child injure their own body or lay awake at night wondering who will care for them after you die,” she wrote, “you don’t get a say in that one.”
Acknowledging this also includes hearing perspectives like mine. For my husband and me, the suggestion that our daughter would somehow be “better” or more herself without autism feels wrong and incomprehensible.
This isn’t to say that we love every aspect of autism. Providing our kid with the support she needs as a result of her diagnosis has been and maybe always will be really, really hard. For us though, our daughter’s unique, intense, heartfelt way of processing the world around her is embedded in who she is as a human. Her unique brain wiring, for all its challenges, is an inextricable part of what makes her the bright, wild, beautiful kid that she is. In other words, autism has not destroyed her or our family, and you don’t get a say in that one, either.
• Autism also deserves care because of the long and horrifying history of discrimination against people with disabilities, including autistic people.
In the 1930s, German officials ordered that people with disabilities — including individuals with Down’s syndrome, cerebral palsy and schizophrenia (which included people who today would be diagnosed with autism) — be placed on a registry where extensive data was collected, including individuals’ diagnoses, family medical histories, and the kinds of work that they were deemed capable and not capable of doing.
Eventually, officials would comb through this data to determine who was “fit” to live. In 1939, “useless” and “unworthy” babies and toddlers were placed in facilities where they would be starved and/or slowly poisoned over the course of months until they died. Older kids and adults with disabilities (many of whom had already been subject to forced sterilizations) were also gathered up to be used in horrific medical experiments and/or killed.
The arguments they used to justify this?
That people with special needs were a “curse” that “destroys entire families”; that these people were “useless eaters”; a “burden” on the German taxpayer and economy, and a “disease” that threatened Germany’s great economic, social, and moral future unless they were “cured” or eradicated.
This brings me to the Fox News interview with Kennedy, which aired a few days after his first and now infamous HHS press conference. After talking with the host about Froot Loops and the testosterone levels of 68-year-old men, Kennedy shifted to autism, misattributing the “tsunami of anger” he’d faced because of that press conference before explaining why he is so fixated on this issue.
The reasoning he provided sounded disconcertingly familiar:
That autism has a destructive “economic impact … social impact … moral impact on our country to lead the world to be an exemplary nation. All of that is challenged to have the vigor and robust population that we need to become an industrial and economic power again. We’re destroying all of that.”
So here’s where I’m at:
• I am all for fewer harmful chemicals in our food, household products, water and air.
• I am also all for sound, ethically conducted medical research, including autism research that can help us better understand the complex factors that contribute to it.
• But here’s the thing: If you are rejecting scientific consensus, ignoring the lived expertise of autistic people, and hiring unqualified individuals to mine private health data under the guise of “research,” while literally slashing funding for autism research currently being conducted, I do not want you anywhere near my child’s medical records, pharmacy history or wearable device data.
• If your comments are fixated on autism’s harms and root causes while ignoring the urgent need to expand meaningful supports — like fully funded public school special education programs, comprehensive caregiver services, accessible and affordable therapies, and policies that empower autistic people to live their best lives — then your “advocacy” has zero credibility.
• And if you’re mirroring rhetoric that has been used to justify the mistreatment, abuse and genocide of people with disabilities throughout history — language that ignores the complexity, diversity and humanity of the people and issues you’re talking about while reducing a person’s value to their perceived impact on national and economic strength and status — then what you’re doing is not just weird and misinformed; it’s familiar and it’s dangerous.
People with autism and their families deserve to have passionate, knowledgeable, compassionate people in power advocating for them. RFK Jr. is not it.
Aly Bernisel is the mother of two, including a daughter on the autism spectrum. She lives in Snohomish.
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