'DISRESPECTFUL'

(OSV News) -- For many of those who know and love someone who is neurodiverse -- living with autism -- the words of U.S. Health and Human Services Secretary Robert F. Kennedy Jr. earlier this spring stung like a slap in the face.

In an April 16 briefing, Kennedy announced plans for a national autism registry, while declaring the condition a "preventable disease" that "destroys" families.

"These are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go on a date. Many of them will never use a toilet unassisted," Kennedy asserted, characterizing some 25% of those with autism as severely impacted with the catalog of deficiencies he recited. "And we need to recognize that we are doing this to our children."

Kennedy contends that autism has an environmental cause -- and therefore, is avoidable.

HHS, the secretary said, will soon announce a series of new studies "to identify precisely what the environmental toxins are that are causing" autism; he promised the agency will "get back … with an answer to the American people very, very quickly."

Reaction from secular quarters to Kennedy’s comments was swift and angry. His words were denounced as uninformed and reliant on destructive stereotypes, while the national autism registry proposal -- pitched as a way to gather valuable research data, but later walked back -- was discredited as darkly reminiscent of historical regimes that tracked vulnerable citizens for malignant purposes.

How did Catholics respond?

OSV News spoke with those who are neurodiverse, and those who parent and advocate for them.

"Well, the community certainly is reacting, right?" observed Carrie Cariello, bestselling author and mother of a son with autism. Her newest book -- "Autism Out Loud: Life with a Child on the Spectrum, from Diagnosis to Young Adulthood" (Park Row), co-written with Kate Swenson and Adrian Wood -- shares experiences and learnings about life alongside autism.

Reflecting on Kennedy’s speech, Cariello carefully chose her words.

"I think it's very complicated, and it really did highlight a part of our community that often goes unseen," she said. "I do think autism is a spectrum. I think delivery matters when it comes to being a person in a powerful position who's expressing comments or a strategy -- and I think there was an element of an elegant delivery that was missing."

It also seems the HHS secretary may not have considered that it wasn’t just parents who were listening.

"My son is 20. He consumes media. He lives in a supported community, and takes a college class," Cariello shared. "And so his reaction was really visceral -- and it took me by surprise when he said, 'Did autism destroy our family?' He texted me late one night, and it just kind of made my breath catch."

Cariello immediately responded to her son’s query.

"I wrote back, 'No -- never, ever, think that.' And then he wrote me back. He said, 'In my opinion, autism is a spectrum.’ And I thought, 'How perfectly said.'"

Cariello says autism encompasses "a range of abilities, vulnerabilities, temperaments, behaviors and characteristics."

She then stated what might seem obvious, but apparently isn’t.

"We have to be respectful," she cautioned, "that there are also people with autism who have self-awareness enough to understand what's being said about them."

As to the possible registry, Cariello is not a fan.

"I think it's just one more opportunity for what I call de facto discrimination."

Again, she was deliberate with her words.

"I do think finding out what causes autism is important. But we can do it in a way that preserves human dignity -- and that's at the root of what went wrong in that speech."

The Catechism of the Catholic Church is explicit with respect to the universality of human dignity.

"The divine image is present in every man. … Respect for the human person entails respect for the rights that flow from his dignity as a creature. These rights are prior to society and must be recognized by it."

The catechism then adds a message about such rights, for those in positions of power.

"They are the basis of the moral legitimacy of every authority: by flouting them, or refusing to recognize them in its positive legislation, a society undermines its own moral legitimacy," it states.

"We don't mind being the heart of a political narrative if it’s honest and if it has good intentions," Cariello added. "It's difficult to listen to that and think that it did."

John Smith, founder and executive director of Autistic Catholics, who was diagnosed with autism in adulthood, told OSV News that autism is still a mystery to much of the public.

"I think there is still a great deal of misunderstanding about autism in general," he shared. "In my view, the field of autism research has only recently made significant advancements which we're hoping will lead to new practical applications for supporting autistic individuals and our community nationwide."

Still, that doesn’t allow Kennedy a pass.

"Given, however, RFK Jr.'s level of responsibility and oversight," Smith observed, "I am not only concerned, but quite saddened that he holds disturbing and damaging views that expressly contradict accepted research and the lived experience of so many autistic people."

He added that "our concern with RFK Jr.'s statements are that, more than anything, they do not rely on good and trustworthy peer-reviewed, scientific studies."

Smith feels such official views and statements could also diminish the autistic community.

"To allow these views to determine how taxpayer funds are used and to determine research orientation is a threat to our community, as these views seem to want to eradicate autistic people," he declared. "These views and decisions undermine opportunities for autistic and other individuals with disabilities to flourish."

Smith also noted historical context, and a disconcerting reality.

"The types of cuts in services put forth uniquely undermines social dignity. This carries with it a kind of eugenics approach to disability and difference," he explained. "This is not new in the United States; however, I am deeply disturbed that this ideology is being supported so publicly. In fact, most 'cures’ so far proposed for autism involve diagnosing autism prenatally then aborting babies who are autistic or likely autistic."

Like Cariello, Smith identifies dignity as a major issue for the autistic community, directing advocates to "Dignitas Infinita" ("Infinite Dignity") -- a 2024 Vatican declaration on the importance of human dignity, its connection to God, and violations of it.

"(It) breaks open the implications of respect for human dignity really well, and provides practical insights for what it means," noted Smith.

Leo Zanchettin -- board chair of the National Catholic Partnership on Disability and a parent to six children on the autism spectrum -- said he's heard mixed reactions to Kennedy's comments.

In some cases there was "a lot of anger and hurt feelings, and a feeling of being misrepresented or misunderstood," explained Zanchettin. "But for some parents of those with profound autism, there was also the reaction of 'finally someone is speaking about our needs and our suffering and how difficult it is.’ So it's kind of both."

Nonetheless, Zanchettin, too, was skeptical of the HHS secretary’s speech.

"There are people with profound autism who are able to do more things than RFK Jr. has described. And I think more to our Catholic understanding -- whatever they're able or not able to do, their dignity is unchanged," he emphasized. "I mean, profound or moderate or high-function autism is not the same, and we can't lump everyone together as his comments initially appeared to do. Neither can we say, 'These poor people; we have to pity them and we have to do everything, and we have to kind of take over for them and direct their lives.’ And that's not always the case."

Zanchettin also questioned Kennedy’s comments concerning environmental toxins.

"He is basically trying to say that it's environmental," he observed. "And while I don't think we want to minimize the effects of a degraded environment, it seems like perhaps a bit of a leap at this point to attribute it all to environment."

Like Cariello, Zanchettin also mentioned his children’s self-awareness.

"There’s a blessing in the kids knowing they are autistic. Knowing that they have a different neurological makeup which makes them think and respond differently to their peers, and which does in some ways disable them," he reflected. "But in other ways, it makes them more alert -- and ironically, more empathetic and more emotionally aware."

As both a father and an advocate, hurtful comments are not new to Zanchettin, who characterizes himself as introverted -- until the oblivious statements start.

"When I'm in a meeting with three or four or five other administrators -- none of whom is disposed to do anything to help my kid -- and I hear statements that are just plain offensive, I have to swallow that introversion and say, 'This is wrong. That's an irresponsible statement. We need to work better at this.’"

Kimberley Heatherington writes for OSV News from Virginia.