Stop everything and educate yourself!
Kidding. We can’t be experts on everything. But one of my hopes with this newsletter is to encourage parents and others affected by autism—especially those in the Church. New information rarely changes people, but there’s so much bad information out there, that I believe a “cheat sheet” is in order.
Basics
People are born autistic.
Autism doesn’t “go away.” You can’t “get better.”
You don’t “have autism” in the way you “have depression” or “have anxiety.”
Autism is a lifelong disability which affects how people communicate and interact with the world. It is like having different software: you are a Mac, and the rest of the world is a PC.
There is no “autism epidemic.” The reason for the rise in autism diagnoses is better information, better testing, and—um—generally not sending the disabled off to insane asylums.
What it looks like
For autistic persons, there are three “clusters” of differences (McCaskill):
social and communicative—they don’t pick up on what is “normal”
systematizing—they are drawn to systems and like to do things in systematic, repetitive, or predictable ways.
sensory—they often process their environment in a heightened, vivid way. What we “filter out”, they do not.
Yes, autism works on a spectrum. For some, autism is extremely debilitating. For others, not so much.
It is not helpful to describe people as “high functioning” or “low functioning”. One, because that conditions how we treat them. Two, because it is possible for someone to be relatively “normal” in Area A and Area B but not in Area C.
Some are verbal, some aren’t. Some are “good at math,” some aren’t. Some “rock” or “bang their heads,” some don’t. Some kids “line up toys,” others don’t.
The adage is true: “if you’ve met one autistic person, you’ve met one autistic person.”
Causes and Cures
There is no known cause of autism. We do know it’s genetic…somehow. As Andrew Solomon says, if we can understand autism we can understand the brain. It is a profound mystery.
There is no cure for autism. And we shouldn’t want one. If my son, Sam, was no longer autistic, he would no longer be Sam.
Whatever you think about the Covid-19 vaccines, autism is not caused by vaccines (emoji clap hands). Andrew Wakefield, who came up with the “vaccine theory” in 1997, committed deliberate fraud, and his theories have been dismissed by multiple scientific studies.
Autism is not caused by mold.
Autism is not caused by parenting. Leo Kanner, who came up with the “refrigerator mother” theory (blaming moms for autism), was also a fraud. Do you notice a theme?
Why is our culture so obsessed with causes? Why do we always need someone or something to blame?
Being with Autistic people
They might have meltdowns. This is not the same thing as a tantrum. Tantrums happen when people don’t get their way or want attention; meltdowns happen when the autistic person is overstimulated or overwhelmed.
They might not look you in the eye. Boomers, this isn’t a sign of disrespect.
Assume competence. Assume they are able to comprehend, able to listen, able to play.
Many are very social. But they play differently. Often, they play “alongside” and not “with.”
They might “hand flap” (also called “stimming”). This is a way to cope with sensory stimulation. It is the body releasing excitement. It is normal, and you shouldn’t try to stop it.
I hope we can learn to be curious about these differences, and not trap the autistic in our highly specified—and yet arbitrary—concepts of “normal.”
Final Thoughts
Maybe, in the end, this is simply a list of true statements about human beings. We are complicated. We aren’t all the same. We can’t always find the “cause” for why we are the way we are, nor can we be “cured” any time soon. We would like people to slow down to be with us. We would like people to stop trying to fix us or make us into projects. We would like people to assume the best of us—that we are smart, competent, and capable. We are overstimulated and overwhelmed. We meltdown.
And yet, there are things about autism that are profoundly different. I hope we can learn to be curious about these differences, and not trap the autistic in our highly specified—and yet arbitrary—concepts of “normal.”
Sources: The Autistic Press (“Start Here” booklet), Grant McCaskill, Andrew Solomon, and probably others.
"Assume the best of us" is a wonderful approach to interacting with others. Thank you for this piece, my friend.
Tremendously helpful. Also, I'm not sure I'll be able to adequately repay you for introducing me to "Becoming Friends of Time." What a gift, man.