(Warning: this one’s a little bleaker. No snarky photo captions, funny pictures, or extremely-online millenial jargon.)
Last month, the Free Press (run by Bari Weiss) published an important piece on autism. It struck a nerve, to put it mildly—so much so that two weeks later, FP scheduled a live-event to continue the conversation.
The original piece is written by a Jill Escher, a Stanford professor and mom to two autistic children. She highlights a series of problems as it pertains to autism—how we talk about autism, what we’re doing about autism—and then begins to propose a series of solutions.
Let’s summarize them:
A Series of Problems
Problem #1
Autism diagnoses are rising rapidly—and we still don’t know what causes autism.
Problem #2
We tend to fill this void of information with unfounded and unscientific explanations like the “vaccine theory,” which has resurfaced yet again with the presidential candidacy of RFK Jr.
Or…
Problem #3
Fatigued, we simply give up on trying to find a cause or explanation at all.
Problem #4-
The neurodiversity movement, which espouses to help persons affected by autism, actually makes matters worse. Instead of pursuing scientific research, neurodiversity “advocates” school us to celebrate autism—sugarcoating the matter, and calling something that can be a profound disability a “superpower.”
Problem #5-
In the long run, the “let’s celebrate autism as a superpower”-approach will only enable and exacerbate our current unpreparedness to care for the rise in autistic persons (see problem #1).
Problem #6-
This unpreparedness is worrisome given that one day, parents of autistic children will die—and who will care for their children then? Not to put too fine a point on it…but if you are a parent to an autistic child, you better find a way to live forever.
Problem #7-
Because the world is changing. On a policy level, the elimination of sub-minimum wage jobs (and, I would add, the proliferation of AI) will only make matters worse: leaving most autistic persons without meaningful work.
Possible Solutions
Okay, that’s bleak. In light of such issues, the author proposes a series of solutions throughout:
Solution #1
On a research front, we must not give up in our scientific pursuit of autism “causes.” We must continue to research genetics, environmental factors, and other leads.
Solution #2
Until we find scientifically backed explanations, we must not fall for “unscientific” and “irresponsible” explanations like the “vaccine theory.” Nor can we chalk up the rise in autism diagnoses to pure sociological answers like “more awareness.” No explanation is better than a bad explanation.
Solution #3
We must delineate different manifestations of autism—recognizing that for many, autism is decidedly not a “superpower” but a disabling and debilitating way of life. We mustn’t fall for an empty, progressive “empathy” which confuses celebration with care— real, tangible, long-term, medical, social, and psychological care.
Solution #4
We must start thinking about our future, and acting now so to prepare for the various “costs” of caring for the autistic. One day, parents of autistic children will die. Siblings cannot be counted on to care for them. Who will?
Closing Thoughts
This was a really important piece.
First, it highlights our obsession with creating explanations or causes when one is not there. “It always amazes me,” the author muses, “that the vaccine hypothesis, an idea so devoid of biological plausibility and so debunked by rigorous research, remains popular.” It does not amaze me. As T.S. Eliot wrote, “Humankind cannot bear very much reality.”
Second, it highlights our need to call a spade a spade. A disability is a disability. Glossing it over with cute language is not the answer. For example, in my son’s new public school district, they call his ECSE (early childhood special ed) program “Pre-K”—evidently as a way of glossing over the fact that there are children with special needs.
Autism is not an accident on the part of God. The mirror that is the image of God in my son was not shattered when he was born autistic. He is a profound gift to me and to the world. And yet. Autism really and truly affects the life of the autistic person and those around them. Is some (and in some cases, perhaps even most) of what makes autism a disability due to sociological reasons like small-mindedness, bullying, human insecurity, or lack of empathy? Yes. Would the life of the autistic person be much better if they were accepted and not scorned? Yes. But there are also non-sociological components that are just hard.
Third, it highlights our urgent need to chip away at the current autism “crisis.” The crisis is not that there are autistic persons. The crisis is that we do not know—or in some cases, care to know—how to help them. And so, (i) we must not abandon scientific research that might uncover a “cause” or “explanation” or “autism gene” or “environmental factor.” If one is never found, so be it. That is where the Church must come in. (ii) We must not abandon those who cannot care for themselves—whether that is the autistic, the physically disabled, the old, or the poor.
“Autism parents can’t die,” Escher writes. We must ask: for whom else does this statement hold true? As we look out into the world, the Church must ask: what parents—because of the children God has entrusted into their care—can’t die? And how do we help them?
I listened to Judy Escher's seminar she did with The Free Press, and I really appreciate the nuance she brought to this conversation! While others who want to focus on cure research completely trash the neurodiversity movement (and tell "higher functioning" people like me that all my problems are fake), she actually gave lots of credit to the movement's ability to improve some autistic people's lives. She says the problem is that it often ignores the struggles that children like hers face--and sometimes even the fact that high functioning autistics can't function highly at all. As someone who's had to constantly beg service providers to see I actually need help, that was refreshing to hear! I agree that the changes to the DSM-5 really only benefited me, but failed autistics like the Escher's. Just because I like not having to say PDD-NOS anymore doesn't mean the autism name alone works for everyone. And I think the fact we're still trying to find the best way to describe our "functioning" or "support need" level proves that.
Despite agreeing with these points, I'm still very nervous about trying to find a cause for autism, especially one that can be found through prenatal testing. I can see how this would cause mass abortions of autistic children before they're even born, similar to what has happened with the Down Syndrome community. As an autistic Christian, I want to know how we can find these scientific answers without falling into some real twisted eugenics that says some of God's image bearers are better off dead than imperfect.
Ok, so I was *literally* just starting to work on a piece called "I'm Not Allowed to DIe" and this was before I read your piece.