09/30/2025
I didn’t have a very accurate picture of the way the world worked when I was thirteen years old.
(Warning that this post ahead is absolutely full of ableism. I’m referring to it in the past tense—sharing my own misconceptions and wrong things that I believed. I think me being honest about this journey, even the really awful parts, is important. But it’s because I know that it’s terribly relevant today, too. If this isn’t the post for you, if you’re not able to engage with that right now, that’s okay. Take care of yourself. ❤️ )
My understanding of occupational therapy was always inextricably intertwined with that of adoption and also parenting children with disabilities. When I was thirteen, my mom’s friend adopted a baby with Down syndrome from Ukraine. I was newly allowed to use the internet, and they had a blog about the process. I followed along with interest.
In the process, I learned about OT (and PT and speech) and I went “oh, that’s what I’ll do with my life.” Up til then I had thought I’d probably be a teacher. I knew I wanted to work with kids but specifically that I wanted to play and do art with them.
I also learned a somewhat more realistic understanding of adoption (at least international adoption). I’d been fascinated by it for years—I played “adopt from an orphanage” instead of “moms and dads” with my stuffies when I was a kid—but my understanding had been shaped almost entirely by, e.g., Annie or Stuart Little and wasn’t very accurate to how the world actually worked.
And, for the first time, I thought about what it would be like to parent a disabled child. I learned a lot about different types of disability from researching based on a fundraising website that tried to give grants to people adopting disabled children who were living in orphanages all around the world. Down syndrome, spina bifida, cerebral palsy, HIV, thalassemia, Apert syndrome, fetal alcohol syndrome, Angelman syndrome, Prader-Willi syndrome, arythrogriposis…I would type them into the search bar, research, learn about them, learning more about genetics and DNA and the way that humans form in the womb in the process. And I would think about whether it would be possible for me to someday be a parent of a child who had these disabilities. I would research what kinds of doctors or therapies or supports they needed. I began reading other blogs by other families who were adopting internationally, other books from the library of people living with or caring for someone with all kinds of disabilities.
And.
And.
And I secretly thought to myself, “the one thing that I could never do is adopt a child with autism.”
All I knew was what I knew how to research as a young teenager. All I knew was what I got from a very simple Internet search of child-friendly, sanitized, medical-professional-approved sources. And what that told me, what I believed then, was something like: autism is a scary and terrifying thief. You have a child who seems “normal” and then one day without warning they turn inward. They don’t know how to love you. They make frightening noises and bang their heads and run away from you into dangerous situations. They don’t speak. Normal, basic things in life overwhelm their sensory systems. They can’t take care of themselves. These things are all stolen from them by autism, a frightening disease.
I told everyone who would listen that I’d become an occupational therapist when I grew up. I was very solid in my plans to adopt children. And I quietly vowed to myself that I wouldn’t adopt anyone with autism. I knew it was the one thing I couldn’t handle.
But I stayed fascinated, for reasons I can’t fully explain. All of the reading I was doing was firmly from the “horrible disease that steals your ‘normal’ child away from you” camp until, suddenly, it wasn’t. I don’t have a clear explanation of the shift. When I reexamine the sources I was reading at 16, 18, 20, 22, they’re all over the map.
As a final paper for high school, I wrote about autism in a surprisingly progressive (for me, at the time) way—referring to it as a neurotype, a brain wiring, and espousing the flawed but well-meaning “some autistic people can even live lives where they do x, y, and z” type of rhetoric. It wasn’t a good landing place, but it was forward motion.
I was reading blogs. Some were “autism parent” type blogs—all about how tragically hard things were, how inconvenient and difficult their kids were, how they loved “their kid” who was ostensibly buried underneath the autism somewhere. Some were savantish, all about a kid with some unique skill that made them special and interesting. But some were just realistic about their kid—or, even better, some were telling stories about themselves.
My perspective began shifting, even though it was in resistance to the formal schooling on the subject that I was now going through. I was learning from people’s lived experiences shared online about identity-first language even as my professors were endorsing person-first language. I was discovering non-traditional autism presentations at the same time as I was being taught the DSM-V.
I was still in grad school when my son became part of my family. Through an adoption that looked so much different than I ever had planned or expected. With an Autistic brain that was his whole shining self from birth. There wasn’t some other kid locked inside my kid, obscured by some ugly thing on top of him. No. There was just my son, my perfect son.
And still more to learn. More to read and more to write. More to refine and more to sit and listen to. More to look in a mirror and reflect upon and more to look at my son and contemplate. More to trial and error and more to lock in. More to accept and more to ignore.
There are times in my life where I would’ve written things about autism that would now fill me with shame and disappointment, which is why it’s so very, very important that I lay them all bare before you, for a few reasons:
Because anyone could be at any point on this journey right now and still keep going. I’m not talking about people who obviously have their mind closed to learning. I’m not saying you owe the ignorant your endless labor. I am saying that *I* owe them *mine*, because I can see where I was before from where I am now, and I can wave back and say “come on! A little further ahead! This way!”
Because the things that I believed autism was, were very largely actually things that represent someone who is Autistic *and in distress*—not Autistic and totally fine. That’s the case with a great deal of the DSM criteria. You often have to have an Autistic person traumatized by the world they’re in first before they look “formally” Autistic. And that’s an important thing to hear, because if you’re *expecting* autism to look like a traumatized neurodivergent brain, all kinds of bad conclusions can come from that.
Because at large, the way autism is being talked about in the media is shameful and disappointing on many many levels. And the clearest way I can negate that is to take it in my hands and say “yeah, we all have to start somewhere” and point you forward.
Some Autistic people can speak and some can’t.
Some Autistic people can do some self-care tasks and some can’t.
Some Autistic people are overwhelmed by sensory things and some are overwhelmed by different sensory things and some aren’t.
Autism is not a terrifying thief. Autism is not a disease. Autism is not a superpower. Autism is a type of way human brains can be.
Human brains can be lots of ways. Autistic is one of them.
Autistic brains process things differently than allistic brains. Often they process deeply, with many, many neural connections on one point instead of fewer but broader neural connections on lots of points. That means that if that point is something sensory or emotional, they might be feeling that sensation or emotion to all-encompassing depths that an allistic person doesn’t. If that point is informational or passionate, then they might be completely enthralled by that information or passion.
And that’s one type of way brains can work. And brains can work a lot of different ways. And anyone who tries to tell you otherwise is either selling you something or just flirting with eugenics, neither of which I’m okay with.
I didn’t have a very accurate picture of the way the world worked when I was thirteen years old, because I was thirteen and still learning. But fortunately, as I’ve gotten older, I’ve been steered in the right directions by listening, listening, listening to people writing about their own selves.
So, at the end of this super-long post, I guess that’s the takeaway I want you to have most of all. If you’re feeling confused or frightened or uncertain after hearing discussion in the news about autism, the good news is that you can literally just go listen to what Autistic people have to say on their own behalves. It’s okay to not have all the answers. It’s okay to be at a messy place on your own journey of understanding. It’s okay to say “I was wrong”.
I was wrong. I’ve been wrong. I’ll be wrong again, I’m very sure. I’m happy to say it. I couldn’t possibly admit it hard enough. I was wrong. I thought I couldn’t be the very parent I am. I was afraid of the idea of my son.
I was wrong.
I’m so thankful that I was.
[image description: a selfie of me reclining on a couch, with my sleeping baby son on my chest. His face is turned away from the camera, so all you can see is thick black hair. Speaking of hair, my own hair is brown, long, and with a fringe across my forehead, so I’m barely recognizable. I’m smiling into the camera. I’m sleepy and terrified, but the thing terrifying me is all of parenthood all at once. I have no idea that there are two Autistic brains in this photo. I am clueless in many many ways. I am also smitten with this very perfect little guy. End description.]
